The document reviews expert patient programs for chronic disease management in high-income countries and explores their relevance for HIV/AIDS care in low-income countries with severe shortages of health care workers. It finds that current models of antiretroviral treatment delivery are too intensive in their use of skilled staff to scale up in most sub-Saharan African countries. However, chronic disease self-management programs that train lay people living with the conditions to support others have improved health outcomes and reduced healthcare use. Similarly, people living with HIV/AIDS currently play roles in HIV prevention, home-based care, treatment adherence and literacy that could be expanded under an expert patient model to help address the human resource constraints facing HIV treatment scale-up
Emergency care systems in low and middle income countries are inadequate, leading to high rates of preventable death and disability. Limited access to emergency services is a global problem that disproportionately impacts the poor and vulnerable. While some solutions have aimed to improve transportation, communication, and training, overall emergency care remains underprioritized and underfunded. Systemic issues across health systems including inadequate resources, coordination challenges, and low prioritization of emergency care collectively contribute to gaps in emergency access. Improving emergency care requires addressing challenges across multiple levels from improving awareness and affordability for individuals to strengthening national health systems.
The document discusses the ongoing Ebola outbreak in West Africa and the factors contributing to its severity. It argues that the high mortality rates are due not just to lack of staff and resources, but more fundamentally to lack of adequate health systems to effectively deploy them. In particular, it notes the lack of basic protective equipment, guidelines, and supportive care that could reduce unnecessary deaths. It calls for responses to both provide immediate aid and invest in building sustainable systems focused on quality, safety, effectiveness, and treating patients with dignity to restore lost trust and prevent future crises.
This document is a handbook produced by the World Health Organization for monitoring the building blocks of health systems using indicators and measurement strategies. It contains six sections that outline indicators for monitoring different components of health systems, including: health service delivery, the health workforce, health information systems, access to essential medicines, health systems financing, and leadership and governance. The handbook was developed through collaboration with experts from around the world and aims to help countries track and evaluate their health systems and progress.
This document presents the World Health Organization's (WHO) framework for strengthening health systems to improve health outcomes. It outlines six building blocks of a health system: service delivery, health workforce, information, medical products/vaccines/technologies, financing, and leadership/governance. The framework aims to clarify WHO's role in supporting countries' health systems and achieving health goals like the Millennium Development Goals. Key aspects of WHO's response include developing a common understanding of health systems; better integrating health system and program work; strengthening WHO's role at the country and international levels; and enhancing staff capacity and partnerships.
The document discusses the changing role of hospitals. It notes that hospitals are evolving within a new framework of healthcare management in response to internal and external changes. Some of the challenges hospitals face include uncertainties around future patient needs due to an aging population and the progression of chronic diseases. Hospitals also have to balance emergency care with planned management of patients. The role of hospitals is gradually shifting from cure-focused to more emphasis on healthcare, community care, prevention, and public health. The changing role requires hospital management approaches to also adapt.
Presented by Clem Bezold and Trevor Thompson
Public health in each city and county in the United States works to ensure the conditions for all to be healthy. Public health investigates disease outbreaks, fosters health promotion and health equity, and assures that health care is available. And it typically focuses on the most vulnerable in the community. There are several forces changing public health—what it does and how it operates. The effects of climate change on local communities, other types of emergencies, future infectious diseases and their surveillance, optimal approaches to health promotion for communities, the role of health care providers in enhancing population health, the state of health equity or fairness—these are among the topics considered in the scenarios. The Institute for Alternative Futures, with funding from the Robert Wood Johnson Foundation and the Kresge Foundation, has developed a national project developing Public Health 2030 Scenarios. This session will present those results.
The document provides guidance on integrating human rights considerations into Global Fund grants. It recommends that applicants:
1) Identify key populations most affected by HIV, TB, and malaria and human rights barriers they face in accessing health services.
2) Design disease programs using a human rights-based approach to remove these barriers.
3) Invest in services like community strengthening to promote access for all populations in a non-discriminatory way. Applicants are encouraged to consult with affected communities and human rights experts to comprehensively assess barriers and design appropriate rights-respecting programs and interventions. Protecting human rights is crucial to effectively respond to the three diseases.
Emergency care systems in low and middle income countries are inadequate, leading to high rates of preventable death and disability. Limited access to emergency services is a global problem that disproportionately impacts the poor and vulnerable. While some solutions have aimed to improve transportation, communication, and training, overall emergency care remains underprioritized and underfunded. Systemic issues across health systems including inadequate resources, coordination challenges, and low prioritization of emergency care collectively contribute to gaps in emergency access. Improving emergency care requires addressing challenges across multiple levels from improving awareness and affordability for individuals to strengthening national health systems.
The document discusses the ongoing Ebola outbreak in West Africa and the factors contributing to its severity. It argues that the high mortality rates are due not just to lack of staff and resources, but more fundamentally to lack of adequate health systems to effectively deploy them. In particular, it notes the lack of basic protective equipment, guidelines, and supportive care that could reduce unnecessary deaths. It calls for responses to both provide immediate aid and invest in building sustainable systems focused on quality, safety, effectiveness, and treating patients with dignity to restore lost trust and prevent future crises.
This document is a handbook produced by the World Health Organization for monitoring the building blocks of health systems using indicators and measurement strategies. It contains six sections that outline indicators for monitoring different components of health systems, including: health service delivery, the health workforce, health information systems, access to essential medicines, health systems financing, and leadership and governance. The handbook was developed through collaboration with experts from around the world and aims to help countries track and evaluate their health systems and progress.
This document presents the World Health Organization's (WHO) framework for strengthening health systems to improve health outcomes. It outlines six building blocks of a health system: service delivery, health workforce, information, medical products/vaccines/technologies, financing, and leadership/governance. The framework aims to clarify WHO's role in supporting countries' health systems and achieving health goals like the Millennium Development Goals. Key aspects of WHO's response include developing a common understanding of health systems; better integrating health system and program work; strengthening WHO's role at the country and international levels; and enhancing staff capacity and partnerships.
The document discusses the changing role of hospitals. It notes that hospitals are evolving within a new framework of healthcare management in response to internal and external changes. Some of the challenges hospitals face include uncertainties around future patient needs due to an aging population and the progression of chronic diseases. Hospitals also have to balance emergency care with planned management of patients. The role of hospitals is gradually shifting from cure-focused to more emphasis on healthcare, community care, prevention, and public health. The changing role requires hospital management approaches to also adapt.
Presented by Clem Bezold and Trevor Thompson
Public health in each city and county in the United States works to ensure the conditions for all to be healthy. Public health investigates disease outbreaks, fosters health promotion and health equity, and assures that health care is available. And it typically focuses on the most vulnerable in the community. There are several forces changing public health—what it does and how it operates. The effects of climate change on local communities, other types of emergencies, future infectious diseases and their surveillance, optimal approaches to health promotion for communities, the role of health care providers in enhancing population health, the state of health equity or fairness—these are among the topics considered in the scenarios. The Institute for Alternative Futures, with funding from the Robert Wood Johnson Foundation and the Kresge Foundation, has developed a national project developing Public Health 2030 Scenarios. This session will present those results.
The document provides guidance on integrating human rights considerations into Global Fund grants. It recommends that applicants:
1) Identify key populations most affected by HIV, TB, and malaria and human rights barriers they face in accessing health services.
2) Design disease programs using a human rights-based approach to remove these barriers.
3) Invest in services like community strengthening to promote access for all populations in a non-discriminatory way. Applicants are encouraged to consult with affected communities and human rights experts to comprehensively assess barriers and design appropriate rights-respecting programs and interventions. Protecting human rights is crucial to effectively respond to the three diseases.
This document summarizes Thailand's response to the COVID-19 pandemic between September 2020 and November 2020. It covers preventing local transmission through measures like health communication, physical distancing, and testing. It also discusses ensuring infrastructure and workforce capacity, providing health services, financing coverage, governance, and multi-sectoral measures. The November 2020 update focuses on gradually lifting restrictions while maintaining preparedness for a potential second wave through ongoing surveillance, prevention, and rapid response systems.
Community diagnosis is a tool used in Healthy Cities Projects to understand community health. It involves collecting both quantitative and qualitative data on health status, determinants of health, and potential for healthy city development. The process includes setting up a committee, defining the scope, collecting data through surveys and statistics, analyzing trends and comparisons, reaching diagnoses, and disseminating results through reports and presentations to influence policy. Conducting community diagnosis regularly allows Healthy Cities Projects to continuously improve public health.
EPRD16 - Cristiana Montani Natalucci - The two faces of health: Between waste...Cittadinanzattiva onlus
The document discusses a project by Cittadinanzattiva that examined waste in the Italian healthcare system from the perspective of citizens. It defined waste as any activity, behavior, good or service that uses resources but does not improve health, wellbeing or quality of life. Citizens reported 104 cases of waste, which were classified into 3 categories: use of equipment and facilities (46%), services and performances (37%), and human resource management (17%). Common types of waste included unused medical equipment, unnecessary bureaucracy, and staff assigned to non-health tasks. Based on its findings, Cittadinanzattiva developed a roadmap of 34 activities to improve sustainability and outcomes in the healthcare system.
The Thailand HiT reports that sustained political commitment to the health of the population since the 1970s has resulted in significant investment in health infrastructure, in particular primary health care, district and provincial referral hospitals, and strengthened the overall functioning of the Thai health system. After Thailand achieved universal health coverage in 2002, public expenditure on health significantly increased from 63% to 77% and out-of-pocket expense was reduced from 27.2% to 12.4% of the total health spending in 2011.
This is a presentation made at the National Semester on Medical Tourism and Unabated Medical Negligence in India: A Legal Holistic Perspective organised by NEF Law College and Indian Council of Medical Research on 5th December, 2016
The document discusses the role of hospitals in primary health care. It outlines that hospitals should (1) support primary health care activities through developing referral systems and providing technical guidance, (2) promote community health development by encouraging community involvement, decision making, and education, and (3) provide basic and continuing education to health workers through training programs. Hospitals can also (4) support health services research to improve primary health care implementation and ensure community participation.
Indonesia has a mixed health system with both public and private provision of care. Key achievements include increased life expectancy and reductions in communicable disease rates. However, challenges remain such as the dual burden of disease, natural disasters, weak health information systems, and high out-of-pocket expenditures. Future prospects include expanding the use of telemedicine, incentivizing an even workforce distribution, and passing more legislation to clarify the health system framework.
As a hospital administrator, their roles include planning, organizing, staffing, directing, controlling, and coordinating hospital management functions. The goal of all administrators is to maximize output through productivity and efficiency. Productivity is measured as output over input, and can be increased by boosting output while maintaining or decreasing inputs. Effectiveness means achieving objectives by focusing on outputs and outcomes. Efficiency means achieving objectives with the least amount of resources. Hospital administrators must balance roles related to patients, the hospital organization, and the surrounding community.
This document provides an overview of Federally Qualified Health Centers (FQHCs), also known as Community Health Centers. It describes their key characteristics such as being nonprofit, providing comprehensive services, and having community involvement in governance. It also summarizes the populations FQHCs serve, including many low-income, uninsured, or Medicaid beneficiaries. The document outlines the program requirements FQHCs must meet around patient need, services, management, and governance. It briefly discusses partner organizations that support FQHCs like NACHC, HRSA, PCAs, and PCOs.
The document provides an overview of India's health care delivery system, describing its organization at national, state, district, block and village levels. It explains the key components at each level, including the national Ministry of Health and Family Welfare, state health departments, and primary care facilities like sub-centers, PHCs and CHCs. The document also outlines the functions and manpower of these primary care facilities, and discusses national health policies, programs and the concept of universal health coverage in India.
The Global Thalassaemia Review 2021 (GTR) constitutes perhaps the most comprehensive work of the last decade on thalassaemia.
Comprising of almost 500 pages, the real face of thalassaemia will be revealed to the reader demonstrating the immense disease burden that falls on the shoulders of thousands of thalassaemia patients and their families in their struggle to access quality healthcare services that will enable their survival.
By providing a short pocket guide describing
the best possible practices in the treatment and management
of Transfusion Dependent Thalassaemia (TDT), TIF seeks to support physicians worldwide in making
good clinical decisions that can benefit individual patients and
enable them to advocate for more and better resources for
thalassaemia care at the level of national health authorities.
This effort is also supported in TIF’s educational programme,
aiming to ensure that physicians and other healthcare
professionals have all the necessary knowledge to support
their patients.
Swoc analysis of health care delivery systemalka mishra
This document discusses the strengths, weaknesses, opportunities, and challenges of India's healthcare delivery system. It notes that while India has made progress in developing healthcare infrastructure over the past decades, it still faces major challenges like a lack of access to care in rural areas, low government spending on health, and overburdened public services. Opportunities exist in areas like innovative business models and partnerships to expand access, but privatization and drain of medical professionals pose ongoing challenges.
The document provides an overview of the first five years of the Public Health Surveillance Unit (PHSU) within Vancouver Coastal Health from 2007-2012. It describes the PHSU's core functions of disease surveillance, health assessment, epidemiological investigations, and knowledge transfer to support public health in the region. The PHSU monitors trends in communicable diseases, conducts health profiling of communities, leads investigations into disease outbreaks, and works to build public health capacity.
This review outlines the main organizational, financing, human resources and service delivery features of the health-care system. Although there has been implement in overall health outcomes since the 1990’s the current levels are still below average for the country’s Pacific neighbors. The remoteness of the many rural communities has hampered improvements in health services. This is one of the major challenges that the country faces in order to achieve SDG heath targets by 2030. This Hits highlights steps taken to overcome challenges especially in the face of epidemiological change in disease burden that is slowly taking place in the country.
Basic health issues and role of private healthcare System in PakistanDr Abdul Ghafoor
The document summarizes the structure of Pakistan's health care system and identifies basic health issues in the country. It notes that Pakistan has a poorly organized health structure without clearly defined roles for primary, secondary and tertiary care. It also highlights issues like the high cost of care, lack of health education, uncontrolled quackery, and the large role of the private sector in healthcare delivery, especially in urban areas of Sindh province. The private health sector in Sindh is described as varied without strong regulation, ranging from well-equipped hospitals to informal providers like general stores. The roles and responsibilities of both the government and private sectors are discussed to address gaps and improve healthcare access and quality in Pakistan.
As the burden of NCDs increases, various countries have introduced new and innovative modes of managing them in primary healthcare setting. APO, in conjunction with Duke Kunshan University, China, conducted a 4-country study (Bangladesh, China, Nepal and Viet Nam) to understand the different approaches used in involving CHWs in preventing and managing NCDs. Access full publication here http://bit.ly/2XnWwcd
The importance of family medicine in Eastern Mediterranean countries is discussed. Family medicine is highlighted as the first level of contact with the health system, providing comprehensive and continuing care through principles of primary health care including continuity, accessibility, and community participation. There is a need to strengthen family medicine in the region given the small number of family physicians currently, which is insufficient to meet population needs. Barriers to developing family medicine include the presence of narrow specialists at primary care centers.
This document summarizes research on whether policies in Senegal to increase access to health services for socially excluded groups, such as the elderly, are effective. It finds that the Plan Sésame policy aimed at removing financial barriers for those over 60 has significant limitations. Only 10.5% of those over 60 benefited from the plan due to lack of awareness, management issues, and exclusion of costly services. While the elderly maintain cultural participation, many face economic hardship, isolation, declining family support, and increasing social exclusion. Overall, the document concludes the Plan Sésame has failed to adequately address health needs of the elderly population in Senegal.
Public Healthcare vs Private Healthcare in India A Systematic Review Unnati Kalwani
Today the healthcare system stands at the crossroads. Nevertheless, the last decade has seen a bloom in the healthcare industry especially in areas like telemedicine, medical tourism.
The delivery system, both private and public remains elusive to the sections of society requiring healthcare
This presentation reflects on the current state of the Indian healthcare system.
2007 Hrh Internat Health Volunteers Laleman Wvd & Co 1478 4491 5 19wvdamme
This document summarizes a study on the contribution of international health volunteers to the health workforce in sub-Saharan Africa. The study estimated that in 2005, volunteer organizations employed around 2,072 full-time international health volunteers in sub-Saharan Africa, with around 1,500 being doctors. The study also explored perceptions of these volunteers from the organizations that send them and from health managers in sub-Saharan Africa, finding more negative than positive views among the latter group.
The document discusses concerns about an overreaction to the potential threat of an influenza pandemic. While a catastrophic global pandemic is possible, the actual risk is relatively low compared to more common health threats. There is a tendency for the media and some experts to exaggerate rare health risks, distorting public perception and fueling unnecessary panic. Stockpiling of antiviral drugs is not necessarily the best response, as the effectiveness of such drugs is limited and their high cost could be better spent on more widespread health needs. An objective assessment of risk is needed to avoid an "iatrogenic pandemic of panic."
This document summarizes Thailand's response to the COVID-19 pandemic between September 2020 and November 2020. It covers preventing local transmission through measures like health communication, physical distancing, and testing. It also discusses ensuring infrastructure and workforce capacity, providing health services, financing coverage, governance, and multi-sectoral measures. The November 2020 update focuses on gradually lifting restrictions while maintaining preparedness for a potential second wave through ongoing surveillance, prevention, and rapid response systems.
Community diagnosis is a tool used in Healthy Cities Projects to understand community health. It involves collecting both quantitative and qualitative data on health status, determinants of health, and potential for healthy city development. The process includes setting up a committee, defining the scope, collecting data through surveys and statistics, analyzing trends and comparisons, reaching diagnoses, and disseminating results through reports and presentations to influence policy. Conducting community diagnosis regularly allows Healthy Cities Projects to continuously improve public health.
EPRD16 - Cristiana Montani Natalucci - The two faces of health: Between waste...Cittadinanzattiva onlus
The document discusses a project by Cittadinanzattiva that examined waste in the Italian healthcare system from the perspective of citizens. It defined waste as any activity, behavior, good or service that uses resources but does not improve health, wellbeing or quality of life. Citizens reported 104 cases of waste, which were classified into 3 categories: use of equipment and facilities (46%), services and performances (37%), and human resource management (17%). Common types of waste included unused medical equipment, unnecessary bureaucracy, and staff assigned to non-health tasks. Based on its findings, Cittadinanzattiva developed a roadmap of 34 activities to improve sustainability and outcomes in the healthcare system.
The Thailand HiT reports that sustained political commitment to the health of the population since the 1970s has resulted in significant investment in health infrastructure, in particular primary health care, district and provincial referral hospitals, and strengthened the overall functioning of the Thai health system. After Thailand achieved universal health coverage in 2002, public expenditure on health significantly increased from 63% to 77% and out-of-pocket expense was reduced from 27.2% to 12.4% of the total health spending in 2011.
This is a presentation made at the National Semester on Medical Tourism and Unabated Medical Negligence in India: A Legal Holistic Perspective organised by NEF Law College and Indian Council of Medical Research on 5th December, 2016
The document discusses the role of hospitals in primary health care. It outlines that hospitals should (1) support primary health care activities through developing referral systems and providing technical guidance, (2) promote community health development by encouraging community involvement, decision making, and education, and (3) provide basic and continuing education to health workers through training programs. Hospitals can also (4) support health services research to improve primary health care implementation and ensure community participation.
Indonesia has a mixed health system with both public and private provision of care. Key achievements include increased life expectancy and reductions in communicable disease rates. However, challenges remain such as the dual burden of disease, natural disasters, weak health information systems, and high out-of-pocket expenditures. Future prospects include expanding the use of telemedicine, incentivizing an even workforce distribution, and passing more legislation to clarify the health system framework.
As a hospital administrator, their roles include planning, organizing, staffing, directing, controlling, and coordinating hospital management functions. The goal of all administrators is to maximize output through productivity and efficiency. Productivity is measured as output over input, and can be increased by boosting output while maintaining or decreasing inputs. Effectiveness means achieving objectives by focusing on outputs and outcomes. Efficiency means achieving objectives with the least amount of resources. Hospital administrators must balance roles related to patients, the hospital organization, and the surrounding community.
This document provides an overview of Federally Qualified Health Centers (FQHCs), also known as Community Health Centers. It describes their key characteristics such as being nonprofit, providing comprehensive services, and having community involvement in governance. It also summarizes the populations FQHCs serve, including many low-income, uninsured, or Medicaid beneficiaries. The document outlines the program requirements FQHCs must meet around patient need, services, management, and governance. It briefly discusses partner organizations that support FQHCs like NACHC, HRSA, PCAs, and PCOs.
The document provides an overview of India's health care delivery system, describing its organization at national, state, district, block and village levels. It explains the key components at each level, including the national Ministry of Health and Family Welfare, state health departments, and primary care facilities like sub-centers, PHCs and CHCs. The document also outlines the functions and manpower of these primary care facilities, and discusses national health policies, programs and the concept of universal health coverage in India.
The Global Thalassaemia Review 2021 (GTR) constitutes perhaps the most comprehensive work of the last decade on thalassaemia.
Comprising of almost 500 pages, the real face of thalassaemia will be revealed to the reader demonstrating the immense disease burden that falls on the shoulders of thousands of thalassaemia patients and their families in their struggle to access quality healthcare services that will enable their survival.
By providing a short pocket guide describing
the best possible practices in the treatment and management
of Transfusion Dependent Thalassaemia (TDT), TIF seeks to support physicians worldwide in making
good clinical decisions that can benefit individual patients and
enable them to advocate for more and better resources for
thalassaemia care at the level of national health authorities.
This effort is also supported in TIF’s educational programme,
aiming to ensure that physicians and other healthcare
professionals have all the necessary knowledge to support
their patients.
Swoc analysis of health care delivery systemalka mishra
This document discusses the strengths, weaknesses, opportunities, and challenges of India's healthcare delivery system. It notes that while India has made progress in developing healthcare infrastructure over the past decades, it still faces major challenges like a lack of access to care in rural areas, low government spending on health, and overburdened public services. Opportunities exist in areas like innovative business models and partnerships to expand access, but privatization and drain of medical professionals pose ongoing challenges.
The document provides an overview of the first five years of the Public Health Surveillance Unit (PHSU) within Vancouver Coastal Health from 2007-2012. It describes the PHSU's core functions of disease surveillance, health assessment, epidemiological investigations, and knowledge transfer to support public health in the region. The PHSU monitors trends in communicable diseases, conducts health profiling of communities, leads investigations into disease outbreaks, and works to build public health capacity.
This review outlines the main organizational, financing, human resources and service delivery features of the health-care system. Although there has been implement in overall health outcomes since the 1990’s the current levels are still below average for the country’s Pacific neighbors. The remoteness of the many rural communities has hampered improvements in health services. This is one of the major challenges that the country faces in order to achieve SDG heath targets by 2030. This Hits highlights steps taken to overcome challenges especially in the face of epidemiological change in disease burden that is slowly taking place in the country.
Basic health issues and role of private healthcare System in PakistanDr Abdul Ghafoor
The document summarizes the structure of Pakistan's health care system and identifies basic health issues in the country. It notes that Pakistan has a poorly organized health structure without clearly defined roles for primary, secondary and tertiary care. It also highlights issues like the high cost of care, lack of health education, uncontrolled quackery, and the large role of the private sector in healthcare delivery, especially in urban areas of Sindh province. The private health sector in Sindh is described as varied without strong regulation, ranging from well-equipped hospitals to informal providers like general stores. The roles and responsibilities of both the government and private sectors are discussed to address gaps and improve healthcare access and quality in Pakistan.
As the burden of NCDs increases, various countries have introduced new and innovative modes of managing them in primary healthcare setting. APO, in conjunction with Duke Kunshan University, China, conducted a 4-country study (Bangladesh, China, Nepal and Viet Nam) to understand the different approaches used in involving CHWs in preventing and managing NCDs. Access full publication here http://bit.ly/2XnWwcd
The importance of family medicine in Eastern Mediterranean countries is discussed. Family medicine is highlighted as the first level of contact with the health system, providing comprehensive and continuing care through principles of primary health care including continuity, accessibility, and community participation. There is a need to strengthen family medicine in the region given the small number of family physicians currently, which is insufficient to meet population needs. Barriers to developing family medicine include the presence of narrow specialists at primary care centers.
This document summarizes research on whether policies in Senegal to increase access to health services for socially excluded groups, such as the elderly, are effective. It finds that the Plan Sésame policy aimed at removing financial barriers for those over 60 has significant limitations. Only 10.5% of those over 60 benefited from the plan due to lack of awareness, management issues, and exclusion of costly services. While the elderly maintain cultural participation, many face economic hardship, isolation, declining family support, and increasing social exclusion. Overall, the document concludes the Plan Sésame has failed to adequately address health needs of the elderly population in Senegal.
Public Healthcare vs Private Healthcare in India A Systematic Review Unnati Kalwani
Today the healthcare system stands at the crossroads. Nevertheless, the last decade has seen a bloom in the healthcare industry especially in areas like telemedicine, medical tourism.
The delivery system, both private and public remains elusive to the sections of society requiring healthcare
This presentation reflects on the current state of the Indian healthcare system.
2007 Hrh Internat Health Volunteers Laleman Wvd & Co 1478 4491 5 19wvdamme
This document summarizes a study on the contribution of international health volunteers to the health workforce in sub-Saharan Africa. The study estimated that in 2005, volunteer organizations employed around 2,072 full-time international health volunteers in sub-Saharan Africa, with around 1,500 being doctors. The study also explored perceptions of these volunteers from the organizations that send them and from health managers in sub-Saharan Africa, finding more negative than positive views among the latter group.
The document discusses concerns about an overreaction to the potential threat of an influenza pandemic. While a catastrophic global pandemic is possible, the actual risk is relatively low compared to more common health threats. There is a tendency for the media and some experts to exaggerate rare health risks, distorting public perception and fueling unnecessary panic. Stockpiling of antiviral drugs is not necessarily the best response, as the effectiveness of such drugs is limited and their high cost could be better spent on more widespread health needs. An objective assessment of risk is needed to avoid an "iatrogenic pandemic of panic."
1) A refugee assistance program in Guinea that provided medical care to refugees from Sierra Leone and Liberia may have also benefited the local host population.
2) The study examined rates of major obstetric interventions in a rural Guinean prefecture between 1988-1996, before, during, and after the arrival of over 200,000 refugees.
3) The rates of major obstetric interventions for the host population increased most significantly over time in areas with high numbers of refugees compared to areas with medium or low refugee numbers. This suggests the refugee assistance program improved access to health services for local residents through investments in the local health system and infrastructure.
This document discusses the debate around "vertical" versus "horizontal" financing of health services in developing countries. It argues that a "diagonal" approach, which aims to achieve disease-specific results through strengthening health systems, offers a better solution. The Global Fund and new International Health Partnership initiatives may help broaden the scope of Global Fund financing in this diagonal direction. However, this evolution faces challenges due to limited Global Fund resources and potential constraints from the IMF on countries' ability to expand health spending even with increased foreign aid. The authors argue for a gradual transformation of the Global Fund into a more diagonal and horizontal fund, while maintaining features like civil society participation that help ensure aid additionality.
2007 Tmih Artekin Trial Malaria In Cambodiawvdamme
- The study aimed to compare the efficacy and tolerability of dihydroartemisinin–piperaquine (DHA–PQP) to a 3-day regimen of mefloquine and artesunate (MAS3) for the treatment of uncomplicated falciparum malaria in Cambodia.
- 464 patients were randomly assigned to receive either DHA–PQP or MAS3. The PCR-adjusted cure rates on day 63 were 97.5% for both treatments, demonstrating non-inferiority.
- There were no serious adverse events reported. However, significantly more episodes of vomiting, dizziness, palpitations, and sleep disorders were reported in the MAS3
2008 Shsop Fin Obstetric Care Vouchers In Cambodia Por &Cwvdamme
1) Voucher and Health Equity Fund (HEF) schemes in Cambodia aimed to improve access to safe delivery for poor pregnant women by increasing facility deliveries at public health centers and hospitals.
2) The programs increased the number of deliveries at public facilities, with voucher and HEF beneficiaries accounting for about one-third of total facility deliveries.
3) However, the impact on improving access remained limited due to various financial and non-financial barriers. To be fully effective, vouchers and HEFs need to be complemented by supply-side interventions that also address issues like staff incentives and transportation barriers.
The document summarizes a New Deal project launched in Sotnikum district, Cambodia by the Ministry of Health, MSF, and UNICEF. The New Deal aims to address two major bottlenecks in Cambodia's public health system: low staff motivation due to inadequate salaries, and a mismatch between services offered and population needs. The New Deal introduces the principle of "better income for health staff in exchange for better service." After one year, the New Deal has shown success in Sotnikum by increasing staff salaries, improving commitment and utilization of services. The New Deal has also stimulated policy discussions on sustainable ways to strengthen Cambodia's public health sector.
The document summarizes a pilot project called the "New Deal" implemented in Sotnikum district, Cambodia to improve the public health system. The New Deal negotiated higher salaries for health workers in exchange for increased access, quality of care, and adherence to regulations. It led to higher patient utilization and quality of services. However, challenges remained with financial management, transparency, and sustainability without external support. Lessons indicated that changing entrenched systems is difficult and benefits different stakeholders unevenly.
2008 Pov Ill Book Comparative Anal Social Assistance Cambodia Belgium Itmwvdamme
This document summarizes and compares public social assistance systems in Belgium and Health Equity Funds in Cambodia. It describes Belgium's long-standing, multi-purpose social assistance system operated through public centers. It then discusses Cambodia's Health Equity Funds, which aim to pay healthcare costs for the poorest. Finally, it considers potential lessons from Belgium's experience for designing social assistance programs in low- and middle-income countries, such as the importance of addressing political as well as technical dimensions and considering expanding services beyond only the destitute.
This editorial discusses the concept of "iatrogenic poverty", where illness itself can lead to poverty in developing countries through two pathways. First, the death or disability of an income earner reduces future income generation. Second, the costs of seeking treatment, including opportunity costs and direct costs, can force households to deplete their savings, sell assets, or fall into debt, potentially tipping them into poverty. The convergence of demand for modern treatments, supply of new medical technologies, and lack of regulation in transitional economies exacerbates this problem. Solutions proposed include social health insurance, reforms to improve healthcare provision and costs, and targeted social assistance to directly transfer resources to the poor.
This document describes chronic disease clinics in Cambodia that integrated care for HIV/AIDS, diabetes, and hypertension. Over three years, the clinics demonstrated the feasibility of this integrated care approach. Good outcomes were achieved through complementary adherence support strategies. Services were well-accepted by patients, which helped reduce stigma around HIV/AIDS. The experience showed how HIV/AIDS care can help address other common chronic diseases.
2006 Lancet Viewpoint Poverty And User Fees Uganda&Cambodiawvdamme
The document compares Uganda's abolition of user fees for public health care to Cambodia's establishment of health equity funds, noting that both increased access to care for the poor but through different approaches. Uganda took a universal approach by removing all user fees, while Cambodia targeted the poor through a system that reimburses costs and administers means testing. Key considerations for policymakers regarding targeting, benefits packages, quality of care incentives, and necessary funding levels are discussed.
2004 Lancet Art In S Afr Do The Job Kk & Wvd Smallwvdamme
This document summarizes key findings from visits to Malawi, Mozambique, Swaziland, and South Africa regarding scaling up access to antiretroviral treatment. It finds that lack of human resources is seen as the biggest obstacle, as health worker shortages are severe and increasing due to illness, death, and brain drain. While funds are becoming available for drugs, none of the countries have comprehensive strategies to address the shortage of qualified staff needed to implement ambitious national treatment plans, which aim to increase those receiving treatment by 50-fold or more within just a few years. Addressing the human resources crisis for health is critical to achieve treatment targets and ensure long-term sustainability of health systems overwhelmed by AIDS.
The document contrasts the paradigms and characteristics of primary health care (PHC) and emergency medical assistance (EMA). PHC aims to promote long-term health as part of development, using a reasonable share of resources. EMA focuses on short-term physical survival in emergencies, mobilizing all available resources. Care in PHC balances multiple objectives, while EMA prioritizes effectiveness. PHC services are permanent and decentralized, with financial participation. EMA emphasizes accessibility and temporary specialized services.
This document summarizes the challenges of scaling up antiretroviral (ARV) therapy in low-income countries with a high burden of HIV/AIDS. It notes that while funding has increased, the rate of scaling up treatment has been slower than hoped. Key challenges are the need to transition health systems from acute to chronic care and insufficient human resources. Countries with the highest ratios of people living with HIV/AIDS to doctors and nurses will likely need to develop new delivery models that rely less on clinical staff. Existing models are also likely insufficient and new approaches adapted to local contexts will be needed to achieve the massive scale up required.
2007 P Lo S Medicine 04 04 13 Ooms Medicines Without Doctorswvdamme
The document discusses the Global Fund's intention to focus more on fighting AIDS, tuberculosis, and malaria, and leave strengthening of health systems and support for health workers to other organizations. This could create a "Medicines without Doctors" situation. The authors argue that supporting health worker salaries is crucial for expanding treatment, as shown in Mozambique and Malawi which face major health workforce gaps. The Global Fund's novel approach of sustained international funding for treatment programs is what these countries need to strengthen their workforces long-term. However, some actors want to limit the Global Fund's role in health systems strengthening.
2008 Mal J Access To Act In Cambodia Yeung 1475 2875 7 96wvdamme
This document summarizes a study on access to artemisinin combination therapy (ACT) for malaria treatment in remote areas of Cambodia. It finds that without specific interventions, only a small percentage of people received biological diagnosis or ACT treatment. However, both village malaria worker (VMW) schemes and malaria outreach teams (MOTs) significantly increased access to trained providers and ACT treatment. The study highlights the challenge of ensuring effective malaria treatment in remote communities with limited formal healthcare access, but finds that community-based approaches like VMWs can help address this challenge.
Ichd 2004 H Pol 6 Catastrophic Health Expenditurewvdamme
This document discusses catastrophic health expenditures, which occur when out-of-pocket health costs financially burden households. Evidence from household surveys shows some countries have very high rates of catastrophic spending over 40% of income on health. Determinants include high out-of-pocket costs, for-profit healthcare systems with few safety nets, and weak insurance. To reduce catastrophic expenditures, countries can subsidize costs, expand risk pooling through insurance, and improve access to affordable quality care for the poor. Context-specific strategies may include free or cheap essential services, social or community-based health insurance, and combining supply and demand interventions.
The document summarizes the results of a survey conducted by PAHO on the status of TB-HIV collaborative activities in countries of the Americas in 2010. Key findings include:
1) Most countries have coordination mechanisms for TB-HIV activities, though representation from key groups is still limited. Joint planning is lacking in 29% of countries.
2) HIV surveillance in TB patients is implemented in all countries but only 46% of TB cases know their HIV status.
3) Fewer than half of countries monitor key TB-HIV indicators due to limitations in information systems and data sharing between programs.
4) Coverage of interventions like TB screening for people with HIV, isoniazid preventive therapy and antire
Noncommunicable diseases (NCDs) account for 71% of the deaths worldwideΔρ. Γιώργος K. Κασάπης
NCDs are not selective; they affect men and women in all countries and all socioeconomic classes, albeit with notable regional differences that influence intervention strategies and outcomes. Further amplifying the crisis, the high prevalence and chronic nature of NCDs have a direct impact on economies; the total global burden estimated to reach US$47 trillion between 2010 and 2030. Upjohn, a Pfizer division, shares insights on the major causes, trends and methods of intervention against NCDs.
Sustaining the HIV and AIDS Response in the Countries of the OECS: Regional I...HFG Project
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Integrating CVD screening and treatment into HIV service delivery points_LampteyCORE Group
Integrating CVD screening and treatment into HIV service delivery points
Cardiovascular disease (CVD) is a leading cause of death globally and in low and middle income countries. People living with HIV/AIDS (PLWA) are at increased risk of CVD due to effects of the virus and antiretroviral therapy. As HIV treatment improves survival, managing non-communicable diseases like CVD becomes more important. Three FHI 360 programs in Kenya, Zambia, and Nigeria have integrated CVD screening, treatment, and referral services into existing HIV programs. However, key challenges to integration include disparities in costs for treating CVD versus HIV, limited availability of CVD medications, inadequate health system capacity, and poor funding for non
National guideline for Dengue (Latest) by DGHSJony Hossain
This document provides an introduction and summary of the 4th Edition 2018 of the National Guideline for Clinical Management of Dengue Syndrome published by the National Malaria Elimination & Aedes Transmitted Disease Control Program of Bangladesh.
The summary includes:
1) It is the 4th edition of Bangladesh's national guideline for clinically managing dengue syndrome.
2) It was published in 2018 by the National Malaria Elimination & Aedes Transmitted Disease Control Program under the Directorate General of Health Services.
3) The guideline was updated based on the latest WHO/SEARO guidelines and provides evidence-based recommendations for the clinical diagnosis and management of dengue to standardize care across Bangladesh.
Phelophepha health care visit speaking notes by Min MkhizeSABC News
I am very pleased that we were able to finally make this day happen
after COVID-19 usurped our original plans to visit the train in March.
Having said that it is co-incidental that the visit falls within Breast
Cancer Awareness Month and I am pleased that you have requested me to focus on Breast Cancer awareness in this address.
This document is a newsletter from GTZ (Deutsche Gesellschaft für Technische Zusammenarbeit) that provides updates on health, population, and nutrition topics. The newsletter includes the following:
- Updates on new contact email addresses and books/publications. New publications
Indicators and Information Standards for Frailty ManagementAnnaSeebergHansen
Frailty is a multidimensional condition affecting older adults that can lead to frequent and complex transitions between different health care settings. These transitions often involve multiple providers but lack coordination, resulting in failures to meet patient needs and preferences. Developing standardized patient summaries that consolidate key health information may help coordinate care during transitions and improve outcomes for frail older adults.
Situation Response Analysis final report- SummaryMaryam Hemed
This report summarizes the findings of a situation response analysis of PMTCT, VCT, and CCT services in Zanzibar. Key findings include:
- Coordination of HIV services is led by the Zanzibar AIDS Control Programme, but funding and implementation involves various partners.
- Staff are in need of additional training, especially in counseling and partner involvement.
- Services reach some high-risk groups but could expand outreach to groups like sex workers and intravenous drug users.
- Referral systems between services work reasonably well but could be strengthened through improved monitoring.
- Stigma remains a challenge and prevents some from accessing services.
Keynote address by Dr. Eric Goosby of UCSF, presented at CFAR HIV Research in International Settings (CHRIS) meeting in San Diego, October 1, 2014. Dr. Goosby discussed. "Global Health Delivery and Diplomacy: The Long Road to Sustainable Programs."
The document summarizes the activities of a social action program called "LIVEright LIVERight" aimed at raising awareness of Hepatitis A, B and C in Pakistan. The program was conducted by 13 student volunteers over 3 months and involved educational seminars, poster competitions, awareness walks and lectures at various colleges and universities. The program reached over 1500 people to educate them on transmission, prevention and vaccination against Hepatitis. Feedback was collected through surveys to measure the impact of the awareness activities. The document outlines the objectives, planning, implementation and evaluation of the different awareness activities conducted by the student volunteers under the social action program.
The next pandemic? Non-communicable diseases in developing countries is an Economist Intelligence Unit report. It examines the growing burden of non-communicable diseases (NCDs) in low- and lower-middle-income countries, the drivers of this change, and possible solutions for how healthcare systems can bridge the resource gap to deliver appropriate NCD care for patients. The findings of this report are based on data analysis, desk research and five in-depth interviews with senior healthcare experts.
1200 colm henry voluntary hospital forum final draft may 2015investnethealthcare
This document discusses several challenges facing the healthcare system including health inequality, the changing role of hospitals in Ireland and internationally, and the push toward integrated care due to demographic factors. It notes that hospitals are increasingly expected to work more closely with primary care, social care, and community services to provide coordinated care across settings. Internationally, some healthcare systems like Kaiser Permanente in the US have reduced costs by emphasizing preventive care and shifting care delivery out of hospitals when possible. The growing elderly population is also increasing cost pressures on healthcare systems.
This document provides the Mandera County HIV and AIDS Strategic Plan for 2016-2019. It begins with an introduction that provides background on HIV in Kenya and Mandera County. It then outlines the plan's guiding principles and strategic directions. The strategic directions include reducing new HIV infections, improving health outcomes for people living with HIV, facilitating access to services, strengthening integration of health and community systems, increasing research and information management, promoting use of strategic information, increasing domestic HIV financing, and strengthening county coordination. The plan also covers implementation, monitoring and evaluation, and annexes that include a results framework and resource needs. The overall goal is for Mandera County to contribute to national targets of reducing HIV infections, stigma, deaths and increasing domestic
This document discusses lifestyles and cancer prevention. It notes that unhealthy lifestyles like tobacco use, unhealthy diet, physical inactivity, and harmful alcohol use account for many cancers in Europe. International plans like the WHO Global Action Plan aim to reduce behavioral risk factors to prevent cancer and other diseases. The document then provides statistics on the most common cancers in Europe, noting variations in incidence rates across regions. It highlights monitoring of risk factors like those done by the Italian surveillance system PASSI as important for guiding prevention efforts. Finally, it introduces the next section which will discuss alcohol and its link to cancer.
20 tendencias digitales en salud digital_ The Medical FuturistRichard Canabate
Resaltado de las tendencias que darán forma a la atención médica post COVID19.
No se trata de enumerar estas tendencias, sino de dar una valiosa visión de los factores de conducción detrás de ellas mientras que es muy específico. Se trata de mostrar cuáles son las áreas exactas que deben destacarse entre todas las áreas en el tema "IA en la atención médica", por ejemplo.
This is the February 2021 guidance produced by Directors of Public Health in England on how to exit the pandemic phase of SARS-CoV-2 and live with the virus circulating for some time. This document seeks to including epidemiological and behavioural and psychological insights into practical strategies for local Public Health Teams
Non-communicable diseases like cardiovascular disease and diabetes place a large burden on Bangladesh's health system. Over 50% of deaths in Bangladesh are due to non-communicable diseases. Bangladesh faces a dual burden of infectious diseases as well as a growing burden from non-communicable diseases. Unhealthy lifestyles and environmental changes promoted by globalization and urbanization contribute to common risk factors such as high blood pressure, blood glucose, and obesity, which increase the risk of fatal conditions. The Bangladeshi government has established community clinics throughout the country to improve access to healthcare and reduce the burden of non-communicable diseases, especially in rural areas.
EARLY CANCER DIAGNOSIS - guide from World Health Organization, 2017oncoportal.net
GUIDE TO CANCER EARLY DIAGNOSIS - World Health Organization 2017
Руководство по РАННЕЙ ДИАГНОСТИКЕ РАКА, Всемирная организация здравоохранения, 2017 год, 48 страниц, на английском языке.
1. The document discusses different approaches to healthcare systems and describes how a diagonal approach can effectively launch RHD control programs.
2. A diagonal approach focuses on specific diseases like RHD within the primary healthcare system by using existing infrastructure, resources, and personnel but upgrading them.
3. Integrating RHD control into primary care in this way strengthens the overall system while still allowing for disease-specific priorities and funding. This makes RHD programs more sustainable and effective compared to vertical or solely horizontal approaches.
Similar to 2006 Expert Patients For Art Lit Review Kk&Wvd (20)
2008 Pov Ill Book Challenges In Identifying Poor Oddar Meanchey Cambodiawvdamme
This document summarizes a study that assessed household eligibility for a Health Equity Fund (HEF) in Oddar Meanchey, Cambodia four years after an initial pre-identification process. The study evaluated three tools to assess HEF eligibility: 1) a scoring tool used in the original pre-identification, 2) interviewer assessments, and 3) a socioeconomic status index. The results showed high targeting errors across all three tools, suggesting that the original HEF eligibility granted through pre-identification four years prior did not accurately reflect households' current poverty status. Regular updates of pre-identification combined with post-identification are recommended to minimize targeting errors in the future.
This document discusses the costs associated with increasing access to artemisinin combination therapy (ACT) for malaria treatment in Cambodia. It finds that in addition to the costs of ACT drugs, substantial investments are needed for appropriate delivery systems, including:
- The cost of blister packaging ACT drugs locally, which was higher than estimated due to low production rates.
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2008 Aids Community Support & Art Outcomes S Afr Edwin Wouterswvdamme
This study analyzed data from 268 patients enrolled in South Africa's public sector antiretroviral treatment (ART) program to assess the impact of baseline health, patient characteristics, and community support on ART outcomes after 6 and 12 months. The results showed that delayed ART initiation reduced treatment response, while support from treatment buddies, community health workers, and support groups significantly improved outcomes. Community support had a greater positive influence on outcomes over time, suggesting it can help address human resource shortages in scaling up ART programs.
2008 Ssm Art&Fhs Scale Up In S Afr Wvd Kk Gk Ssm6213wvdamme
This document discusses the challenges of scaling up antiretroviral treatment (ART) in Southern African countries with human resource shortages. It notes that the continuously growing caseload of people needing lifelong ART, shortages and uneven distribution of health workers, and the labor-intensive nature of current ART delivery models pose significant challenges. The document analyzes different scenarios for how health systems may adapt, including maintaining the status quo, strengthening the overall health system through task shifting and community-based care, or more technocratic reengineering of services. Achieving universal access to ART will require innovative approaches to address human resource constraints.
2007 Bmc H Serv Chi&Che Deva 1472 6963 7 43wvdamme
This document summarizes a study on two Indian community health insurance (CHI) schemes and whether they protect households from catastrophic health expenditures. The two schemes studied were ACCORD, which provides insurance to indigenous people in Tamil Nadu, and SEWA, which insures self-employed women in Gujarat. Both schemes cover hospitalization costs up to a maximum limit. The study reviewed insurance claims from 2003-2004 to analyze out-of-pocket payments and catastrophic expenditures. The results showed that both schemes halved the number of households experiencing catastrophic expenditures compared to having no insurance. However, 4% of ACCORD households and 23% of SEWA households still experienced catastrophic expenditures, related to low incomes, low maximum limits
2007 Hpp Panorama 4 He Fs In Cambodia Mathieu Czm015wvdamme
The document provides a comparative analysis of four health equity funds in Cambodia that aim to improve access to hospital care for poor patients. The key findings are:
1) The health equity fund model appears superior to traditional waiver systems in improving health service utilization among targeted poor groups.
2) Design aspects essential to the model's performance include the existence of donor funding, the presence of a driving agent, a clear separation of roles, appropriate identification techniques, and consideration of multiple barriers to health service utilization.
3) The comparative framework may be a useful tool for designing, operating, or evaluating similar strategies in other contexts, though early adoption of common documentation would facilitate generating evidence about comparative performance.
2007 Hrh Doctors & Art In Cambodia 1478 4491 5 12wvdamme
1) The study examines the use of doctor time for antiretroviral treatment (ART) delivery in Siem Reap, Cambodia between 2004 and 2005.
2) It finds that the doctor time needed per patient was reduced by 14-33% from 2004 to 2005 due to fewer patient visits and shorter consultations.
3) Extrapolating to 2013, the clinic will need between 2 to 5 full-time doctors to provide ART based on assumptions about patient survival and further reductions in doctor time per patient.
2006 Hrh Nurses In Swaziland 1478 4491 4 13wvdamme
population ratio is estimated at around 30 per
100 000.
Nurses
The total number of registered nurses in Swaziland was
estimated at 2317 in 2004. Of the 1484 established posts
for nurses in the public and mission sectors, only 1108
were filled (Table 1). This means that 19% of nursing posts
were vacant. The majority of nurses are employed in the
public sector, with only around 300 nurses working in the
mission sector. Based on the information available, we
estimate that
land in 2004. Of these, only around 80 were actually
employed in the public sector, giving a doctor:population
ratio of around 7 per 100 000. The remaining 102 doctors
2006 Aids Real Challenges Art In S Sa Wvd+Kk+Mlwvdamme
This document summarizes the challenges of scaling up antiretroviral therapy (ART) in sub-Saharan Africa. It notes that while the WHO "3 by 5" initiative has made progress expanding ART access, the long-term outlook requires treating millions of people indefinitely. This growing caseload will overwhelm health systems unless new ART delivery models are developed. It also stresses that prevention efforts must be strengthened in parallel to reduce new HIV infections and make treatment sustainable over the long run. New strategies are needed to address both the escalating treatment needs and enhance prevention across communities and healthcare.
2004 Tmih Out Of Pocket Expenditure In Cambodia 1194wvdamme
This document summarizes a study on out-of-pocket health expenditures and debt in poor households in Cambodia during a dengue epidemic. The study found that:
1) Households that exclusively used private providers paid an average of $103 out-of-pocket, while those that combined private and public providers paid $32, and those that only used public hospitals paid $8.
2) Households financed these costs through savings, selling consumables, selling assets, and borrowing money. After treatment, 63% of households were in debt, with those using private providers more likely to borrow or sell assets.
3) A follow-up found that most households with initial debts were unable to pay
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The document analyzes the cost-effectiveness of epidemic control measures implemented in Guinea during cholera, measles, and meningococcal meningitis outbreaks from 1993-1995. Routine health services alone reduced potential deaths by an estimated 51% on average. Additional interventions further decreased potential deaths by an estimated 28% on average. The marginal cost per death averted was $29 for routine health services and $93 for additional interventions. The analysis found that strengthening health services to control epidemics, as was done in Guinea, was highly cost-effective.
This document summarizes the experience of a Health Equity Fund (HEF) managed by a local NGO in Sotnikum, Cambodia. The HEF aimed to improve access to healthcare for the poor by identifying poor patients and paying their user fees. Over its first 25 months, the HEF supported 16% of hospitalized patients. The authors conducted interviews and found that while the HEF effectively improved financial access, poor patients still faced other barriers like geographical, informational, and intra-household constraints. The study concluded that the HEF model showed promising results with minimal benefits leaking to non-poor individuals, but that further research is needed in different contexts.
2002 Tmih V07 P1001 Editorial On Aids Crisis & Ceawvdamme
This editorial discusses the controversy sparked by cost-effectiveness analyses that concluded HIV prevention is more cost-effective than providing antiretroviral therapy (HAART) in sub-Saharan Africa. While the analyses made valid points, the authors argue they overlooked key ethical and human rights considerations in directly linking their conclusions to policy recommendations. Specifically, (1) treating the sick is a basic human right regardless of cost, (2) cost-effectiveness is just one factor in complex policy decisions that must also consider equity and community values. Overall, the response showed that resource allocation for HIV/AIDS should ensure treatment including HAART is made globally accessible based on principles of health as a human right.
The New Deal is an approach used in Cambodia to improve the public health system. It involves providing performance-based bonuses to health staff from resources freed up by donors and user fees. The New Deal has been implemented in Sotnikum district, Thmar Pouk district, and several provincial hospitals with positive results after 2 years in Sotnikum and 1 year in Thmar Pouk. Activities have increased as staff are more motivated. New institutional arrangements like management committees and Health Equity Funds to help the poor access care have also yielded good results. The document analyzes the implementation and lessons learned from the New Deal experiments to help guide further health sector reforms in Cambodia.
1. Expert patients and AIDS care
A literature review on expert patient programmes in
high-income countries, and an exploration of their
relevance for HIV/AIDS care in low-income countries
with severe human resource shortages
Katharina Kober & Wim Van Damme
Department of Public Health
Institute of Tropical Medicine, Antwerp
Berlin and Antwerp, March 2006
2. Table of contents
Abbreviations and acronyms........................................................................................................ 3
Summary.......................................................................................................................................... 4
Introduction.................................................................................................................................... 6
Antiretroviral treatment in low-income countries ........................................................... 6
Human resources for health and scaling up ART in low-income countries ............... 6
Learning from chronic disease care in the North? .......................................................... 8
A. Self-management for chronic diseases in the North ....................................................... 9
Health care and the challenge of chronic illness: The beginnings of self-
management........................................................................................................................... 9
Chronic disease self-management programmes............................................................... 9
Self-management as part of chronic care models .......................................................... 10
Self-management programmes: Examples .......................................................................... 10
United Kingdom: The Expert Patients Programme ..................................................... 11
Australia: The Sharing Health Care Initiative (SHCI)................................................... 12
Self–management programmes: Evaluations and opinions.............................................. 13
Evaluations........................................................................................................................... 13
Opinions............................................................................................................................... 14
B. Roles of People Living with HIV/AIDS in ART programmes in the South ........... 16
Origin of PLHA self-empowerment................................................................................ 16
Activities of PLHA in the fight against HIV/AIDS..................................................... 16
A. versus B. PLHA as expert patients: An untapped resource?.................................... 19
Relevance of self-management for comprehensive HIV/AIDS care ........................ 19
Aspects of current PLHA involvement in ART delivery related to self-management
............................................................................................................................................... 20
Conclusion: Possible ways of tapping the pool of PLHA expert patients?............... 20
References ..................................................................................................................................... 22
The authors welcome any feedback and would be especially grateful for reports of
related field experiences, which should be sent to Katharina Kober (kkober@itg.be) or
Wim Van Damme (wvdamme@itg.be).
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 2
3. Abbreviations and acronyms
AIDS Acquired immuno-deficiency syndrome
ART Antiretroviral treatment
ARVs Antiretrovirals
CBO Community based organisation
CCM Chronic Care Model
CDC Centers for Disease Control and Prevention
CDSMP Chronic Disease Self-Management Programme
GIPA Greater Involvement of People Living with HIV/AIDS
GNP+ Global Network of People Living with HIV/AIDS
HBC Home based care
HIV Human immuno-deficiency virus
HRH Human Resources for Health
ICCC Innovative Care for Chronic Conditions Framework
IMAI Integrated Management of Adolescent and Adult Illness
LMCA Long-term Medical Conditions Alliance
MAP Multi-country AIDS Programme for Africa
MoH Ministry of Health
MSF Médecins Sans Frontières
NGO Non-governmental organisation
NHS National Health Service
OI Opportunistic infection
PLHA People living with HIV/AIDS
SHCI The Sharing Health Care Initiative
TAP Treatment Acceleration Programme
TNP+ Thai Network of People Living with HIV/AIDS
VCT Voluntary counselling and testing
WHO World Health Organisation
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 3
4. Summary
Antiretroviral treatment in low-income countries with severe HRH constraints.
Since antiretroviral drugs (ARVs) became available and antiretroviral treatment (ART)
was proven feasible also in low-income countries, massive efforts have been undertaken
to scale-up ART for the millions of people in need in sub-Saharan Africa, the region with
the highest HIV-prevalence worldwide. Yet, in most countries of the region this scale-up
has to occur on the basis of very weak national health systems, and one of the biggest
bottlenecks it is facing is the severe lack of human resources for health (HRH),
particularly in Southern Africa. ART poses a fundamentally new challenge for these
health systems as it is transforming HIV/AIDS from a deadly disease into a chronic
condition for which millions of people will need lifelong care. Yet, in many areas the
shortages especially of medical doctors, but also of nurses mean that the health systems
are currently not even able to deliver basic health services to the population.
Present ART delivery models are very intensive in their use of skilled medical and
paramedical staff and projections suggest that they can only be scaled up in countries
where the HRH situation is less severe, such as South Africa. In other sub-Saharan
countries, such as Tanzania, Zambia and Mozambique, scaling up ART to all the
clinically eligible people within the next ten years according to the presently most widely
used delivery models, would exceed their total current stock of medical doctors. A
number of ART projects are trying to tackle the HRH problematic by delegating certain
tasks from medical doctors to other cadres. While this task-shifting is certainly an
important step, we contend that it will not be enough for scaling up ART in the high
HIV-prevalence countries with the most severe HRH shortages. In the present report we
argue that an altogether different approach to HIV/AIDS care and treatment might be
required for overcoming the HRH bottleneck. Our review of the experiences with
chronic disease management in the high-income countries in the North shows the
potential relevance of the expert patient concept for HIV/AIDS care in low-income
countries with severe HRH constraints.
Self-management for chronic diseases in the North. In the second half of the 20th
century it was realised that the shift from acute to chronic disease as the main cause of
illness in the industrialised countries required new and different care models. One
particular aspect of most chronic care models was a change in the traditional patient-
doctor relationship which was found to work less well for the management of chronic
than for acute illnesses. Patient self-management came to play an important role for the
management of diseases such as asthma, chronic heart conditions and diabetes. The
most important aspect of self-management is the realisation that people with a chronic
condition are those that have the most comprehensive expertise in dealing with that
condition. This expertise is the result not only of their knowledge about its medical
aspects but, crucially, also about all aspects of day-to-day living with it. Courses in
chronic disease self-management build on this insight by using lay people who are
themselves living with a chronic illness as tutors for other patients. Evaluations of self-
management programmes have shown that not only the health outcomes often
improved but also that patients in many cases reduced their use of the health services.
In 2001, after evaluating many small-scale self-management programmes, mainly
organised by voluntary organisations, the National Health Service (NHS) in the UK
started with the implementation of a nation-wide self-management programme under the
name of ‘Expert Patients Programme’. Early evaluations show good results and indicate
that the expert patient programme has significantly reduced the use of health services,
such as general practitioners’ consultations, outpatient visits, accident and emergency
attendances and physiotherapy use.
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 4
5. Roles of PLHA in ART programmes in the South. It is this aspect of the expert
patient programme in particular that makes it interesting for HIV/AIDS care in
countries with severe HRH constraints. Currently, people living with HIV/AIDS
(PLHA) assume a number of different roles in the care and treatment of this disease. All
programmes and projects we know of use PLHA for certain tasks, mainly in the areas of
health promotion and prevention, home based care, adherence support and treatment
literacy activities. In some places, PLHA associations have organised such activities
themselves, in other places, HIV/AIDS projects have recruited PLHA volunteers to take
over a number of circumscribed tasks. According to our knowledge there is no example
of direct PLHA involvement in the delivery of ART.
PLHA as expert patients: an untapped resource? We argue that the huge pool of
PLHA in high HIV-prevalence countries is an important, and yet untapped resource for
scaling up ART in settings with severe HRH constraints. Many of them have lived for
many years with the disease and have been involved in various aspects of care and
support for other sufferers from HIV/AIDS. Yet, their role in the fight against AIDS
has never been conceptualised as that of professional expert patients. For making the
ART scale-up possible in countries with severe HRH constraints, it might be a promising
option to explore the potential capacities of PLHA associations in order to identify
selected individuals and provide them with the specific medical and psychosocial training
necessary for fulfilling the role of expert patient tutors. With the aim of making ART
delivery less medical doctor intensive one would have to investigate in how far PLHA
expert patients could assume responsibility for medical tasks such as CD4 counts and
follow-up of uncomplicated patients on ART. In certain contexts it might even be
considered to go beyond this and involve expert patients in the initiation of ART.
Certainly, the development of national expert patient programmes would pose its own
challenges for health systems, for example in terms of training and of coordination with
the established infrastructure of the traditional medical and paramedical interest groups.
Still, we argue that the traditional medical model for ART delivery is incompatible with
the severe HRH shortages in many African countries with high HIV prevalence, and that
tapping the pool of experienced PLHA and conceptualising and organising their work in
expert patient programmes has the potential of making the scale-up of ART a reality in
these countries.
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 5
6. Introduction
Antiretroviral treatment in low-income countries
After pilot projects had shown the feasibility of ART (antiretroviral treatment) in the
poorest regions of the world, and the prices of ARVs had steeply decreased, several
major global health initiatives have started to make HIV/AIDS a priority and have
considerably increased funding for the fight against AIDS. i Large-scale efforts are now
underway to scale up ART, and last but not least the G8 has declared their support for
achieving the goal of universal access to ART by 2010.1 However, despite ambitious
plans, new momentum and increased funding, access to HIV treatment in low-income
countries continues to fall short of the growing need. The latest WHO ‘3 by 5’ progress
report from June 2005 reported 1 million people on ART in low- and middle- income
countries.2 Even though this was a considerable increase from around 400,000 people on
ART in December 2003, it fell still short of the milestone of 1.6 million set in the ‘3 by 5’
strategy for June 2005. Data and trends at that time indicated that reaching the goal of
providing 3 million people with ART by the end of 2005 would be unlikely.2 The gap
between the need for ART and the numbers currently receiving it is especially huge in
most of sub-Saharan Africa where the ART coverage lay at 11% in June 2005.2 In
Tanzania, Malawi, Mozambique and Zambia only about 3%, 10%, 4% and 12%,
respectively, of people in need of ART were receiving it by June 2005. According to the
WHO, the countries with the highest coverage in sub-Saharan Africa were Botswana and
Uganda, each with 56%.3
Human resources for health and scaling up ART in low-income countries
Scaling up ART to the millions of people in need remains an enormous challenge,
particularly in the low-income countries with high HIV prevalence because many of their
health systems are at present lacking the capacity to provide even basic health care to the
population, let alone deal with the additional burden of scaling-up ART. One of the main
constraints for delivering health care in many low-income countries is the serious
shortage of human resources for health (HRH), especially medical doctors. This shortage
is particularly severe in sub-Saharan Africa where thirty-one countries do not meet
WHO’s “Health for All” standard of one doctor per 5 000 population and at least twenty
have no more than one doctor per 20 000 population. The Joint Learning Initiative
estimates that sub-Saharan Africa would have to triple its current workforce in order to
come close to reaching the Health Millennium Development Goals.4
Even though the lack of qualified health professionals is not a new phenomenon in sub-
Saharan Africa, it is only in the last couple of years that the ‘chronic HRH shortage’ in
has developed into a ‘HRH crisis’ of serious proportions. Many health systems in the
region are currently experiencing two separate, but mutually reinforcing, developments
culminating in this HRH crisis. On the one hand, their supply of available health workers
is diminishing at an unprecedented scale and on the other hand, the need and demand
for health care is greatly increasing. The former is mainly the result of increased out-
migration of doctors and nurses (‘brain drain’) and increasing attrition rates due to
HIV/AIDS, the latter is mainly due to HIV/AIDS.
AIDS poses a challenge for health systems that is fundamentally different from all other
health problems ever faced. Transforming a deadly disease into a manageable chronic
The most important are e.g. the global health initiatives of ‘new players’, such as The Global
i
Fund, PEPFAR and the Clinton Foundation, and the initiatives of ‘old players’, such as ‘3 by 5’ of
the WHO, the MAP and TAP of the World Bank.
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 6
7. one turns millions of people into chronic patients, in need of life-long regular follow-up.i
Yet, while it is increasingly being recognised that the lack of HRH is a major bottleneck
for scaling up ART, particularly in Southern Africa, there are still only a handful of
studies of the HRH requirements for this. Indeed, up to now the main focus has been on
showing that ART is possible in a given context, and that early results are usually good,
or even excellent. However, the staff needs for putting and keeping people on ART have
rarely been documented in a rigorous way. Nonetheless, there is enough information
available from different sources to show that current ART projects are so intensive in
their use of medical doctor time that a massive ART scale-up according to their delivery
models looks unrealistic against this background of severe HRH constraints.6 Smith, for
example, has projected that if Zambia and Mozambique were to scale-up ART with their
current ART delivery models for all the clinically eligible people within the next 10 years,
they would require only for this activity, two and four times as many doctors,
respectively, as their total current stock of doctors.7 Kurowski and Wyss have studied the
HRH requirements for scaling-up MDG related priority health interventions in Tanzania
and Chad. Their study shows that the doctor and nurse requirements for these selected
interventions, including ART scale-up, would exceed their availability by a factor of
three.8
The following table illustrates the magnitude of the HRH shortages in relation to the
potential workload of HIV/AIDS in selected countries.
Medical
doctors Nurses Total PLWHAs PLWHAs
PLWHAs
per per population per per
100,000 100,000 (in (in 100,000 medical PLWHAs
population population thousands) thousands) population doctor per nurse
Malawi 1 26 900 12,105 7,435 7,435 286
Mozambique 2 21 1,300 18,863 6,892 3,446 328
Zimbabwe 6 54 1,800 12,835 14,024 2,337 260
Tanzania 2 37 1,600 36,977 4,327 2,164 117
Rwanda 2 21 250 8,387 2,981 1,490 142
Zambia 7 113 920 10,812 8,509 1,216 75
Swaziland 18 320 220 1,077 20,427 1,135 64
Botswana 29 241 350 1,785 19,608 676 81
Uganda 5 54 530 26,699 1,985 397 37
South Africa 69 388 5,300 45,026 11,771 171 30
Cambodia 16 61 170 14,144 1,202 75 20
Thailand 30 162 570 62,833 907 30 6
Brazil 206 52 660 178,470 370 2 7
Table 1: Doctors and nurses available and PLHA in selected countries9
i A simple calculation exercise with rough numbers can illustrate the challenge ahead. WHO’s aim is to have
3 million people on ART by 2005 out of the 6 million in need of treatment in low- and middle- income
countries. With 700 000 people on ART in December 2004, 2.3 million additional people would need to get
access to ART during 2005. Let us assume that from 2006 on, an additional 3 million people will be in need
of ART annually, and ART services world-wide will continue to expand by putting 2 million on treatment
every year, and that the annual mortality rate of people on treatment will be 10%. Then, the health systems
of low- and middle- income countries would have to deal with around 10 million patients on ART by 2010,
14 million by 2015 and in 2025 this would level off at around 18 million. In a country with 30% sero-
prevalence, unchanged HIV incidence and an effective ART programme which is putting two-thirds of those
in need on ART, almost 10% of the adult population could be on ART by 2010, a figure that may even
increase to 18% by 2025. Consequently, adult sero-prevalence would increase to close to 40% in 2010 and
even to 48% in 2025.5
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 7
8. Faced with the severe HRH shortages, a number of projects have started to design less
doctor-intensive ART delivery models, in which certain tasks are delegated from health
workers with higher to those with lower qualifications.10-12 WHO’s Integrated Management
of Adolescent and Adult Illness (IMAI) model is designed to make ART delivery feasible in
the context of HRH shortages by task-shifting. The simplified ART protocols delegate a
number of tasks from medical doctors to nurses and from nurses to community health
workers.13 Such task shifting to make ART delivery less HRH intensive is an important
and promising development which is very much needed. Yet, we argue that for the
countries hardest hit by HIV/AIDS and with the weakest HRH base, a more radical
rethink of ART delivery may be needed if the aim remains to scale up ART and to
maintain millions of people on ART. We think it might be useful to look at recent
developments in chronic illness care in high-income countries, and in particular explore
whether the concept of the ‘expert patient’ as a different approach to ART delivery does
not hold promise too.
Learning from chronic disease care in the North?
HIV/AIDS, as a long-term chronic illness (especially when ART is available), is ravaging
many societies in the high HIV/AIDS burden countries with severe HRH constraints.
The health systems in these low-income countries have neither the required number of
HRH for scaling-up ART nor do they have experience with care models for chronic
conditions.
In high-income countries, on the other hand, the predominant disease pattern has
become one of chronic illness rather than acute disease in the second half of the 20th
century. Thus, the past couple of years have seen numerous efforts to transform parts of
the health care systems in these countries into systems better prepared to provide care
for patients with chronic conditions. A central component of all models for chronic
disease care is the altered relationship between patients and health service providers. For
the effective management of a chronic disease it is deemed essential that the patient
assumes an active role in its management, which is a departure from the traditional
‘medical paradigm’ where the patient is seen as a passive recipient of care and treatment
from the medical doctor.i
We are of the opinion that the millions of people on ART in need of life-long care in
many low-income countries pose a fundamental challenge for today’s ART models, with
their heavy reliance on the medical and paramedical professions. The escalating demands
for long-term care risk to become unbearable for the health systems in many low-income
countries, and we need to question the appropriateness of a ‘medical paradigm’ for ART
in high-burden HIV/AIDS countries.15 There is a need for innovative, ‘de-medicalised’
delivery models, based primarily on the communities and on the capacity and
resourcefulness of the people living with HIV/AIDS (PLHA) themselves, with
professional back-up when required. For this purpose, we think it might be useful to
explore the role of the patient in the concepts of chronic disease care, as they function in
several high-income countries.
This drawback of the traditional medical style has been nicely described by Glin Bennet as
i
follows: “Powerful rituals such as examining and prescribing are more charismatic in the absence
of adequate explanation. The problem with this contrived exercise of medical authority is that
overwhelming evidence suggests that it is not very effective. The often quoted reason for this
style of communication is that it will make patients do what is good for them. The sad fact seems
to be that more often they do not.”14
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 8
9. A. Self-management for chronic diseases in the North
Health care and the challenge of chronic illness: The beginnings of self-
management
It was at the end of the 1970s that scholars, especially in the US, began to argue that our
health care models were ill-prepared for dealing with chronic diseases which had become
the main cause of morbidity and mortality in western societies. The ‘medical model’, in
which the health care professional diagnoses and prescribes and the patient complies was
said to work well for acute conditions but to be less effective for chronic conditions. The
‘public health model’ was deemed equally ineffective, as its role was to prevent disease or
to assist with early diagnosis. It was argued that it had not been effective in stopping the
increase of chronic conditions largely related to the aging of our populations.16
The need for a new means of delivering care to people with chronic conditions
prompted these scholars to pioneer new avenues in the management of chronic disease.
They took up the idea of patient self-management, which was first used in relation to
asthma in children,17 identified it as a necessary part of treatment and elaborated it
further into a chronic disease management programme in its own right. The concept of
“self-management” refers to a patient’s ability to understand their condition, to make
decisions, take appropriate actions and manage and organise their access to key elements
of their care. In order to improve the outcomes of chronic care, it was argued, patients
would have to be taught the skills of self-management. A key indicator of a patient’s
ability to self-manage their disease is the degree to which they have a feeling of self-
efficacy. ‘Perceived self-efficacy’ is a term borrowed from behavioural theory where it is
defined as “people's beliefs about their capabilities to produce designated levels of
performance that exercise influence over events that affect their lives”.18
Chronic disease self-management programmes
The realisation that people with chronic diseases do not only deal with disease-specific
but also with many common issues such as pain management, depression, lifestyle
changes and the need to develop coping skills, has led to the development of generic
self-management programmes. The most widely known and used as a model for the
development of individual programmes worldwide is the Chronic Disease Self-
Management Programme (CDSMP) developed at Stanford University.19
The Stanford course is extremely standardised and the university insists that the
programme is only used under licence and that no unauthorised alterations to the manual
are made. The course lasts six weeks with weekly meetings of circa two hours and is
characterised by three features:
1. “It has been developed using the experiences of people living
with long-term illness as the start point
2. It is run in community settings with a heterogeneous group of
people
3. It is lay led, which means it is delivered by lay tutors all of
whom are living with a long-term illness.”19
Number three, i.e. the use of trained lay people with chronic illness as tutors for other
patients is often described as a key feature of the CDSMP.
The main differences between this self-management model and the traditional medical
models of care lie in the roles of both the health care professional and the patient. The
latter has to become able to self-manage the disease on a day-to-day basis; the former has
to learn to “act as a partner in care”16. This means, the health professional will take on
the role of a consultant, a resource person who offers treatment suggestions.
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 9
10. According to the CDSMP the three tasks of self-management are (1) medical
management of the condition, (2) changing and creating new life rolesi, and (3) dealing
with the emotional consequences of having a chronic disease.16 While most ‘traditional’
patient education programmes are aimed at disease-specific knowledge and encouraging
compliance with medical regimes (and most patient support groups focus only on the
emotional tasks), self-management programmes crucially include all three tasks and teach
them in a problem-based way. In order to successfully deal with these three tasks,
patients have to acquire the following five skills: (1) problem solving (2) decision making
(3) resource utilisation (4) forming a good patient – health care provider relationship and
(5) taking action.16
The problems as perceived by the patients are always at the centre of a self-management
course, a pedagogical choice that is often justified with examples from ‘traditional patient
education’ and its effect on the management of chronic diseases. Bodenheimer for
example, argues that diabetes care is not only about knowledge. “If it were, it would be
hard to explain why 74 percent of persons with diabetes have uncontrolled blood
pressure [and] 71 percent have elevated lipid levels”.20 According to the author, an
important reason for this poor management of diabetes is that patient education is not
based on the patients’ perceived problems and physicians do not know how (or lack the
time) to help patients change their behaviour.
Self-management as part of chronic care models
Today, self-management is not normally a stand-alone programme but an integral part of
chronic care models wherever they are being implemented. The most widely
acknowledged chronic care model (CCM) has been developed by Wagner from the
MacColl Institute for Health Care Innovation in Seattle.21 They reviewed more than 70
different chronic disease management activities and on the basis of their observations
developed a chronic care model, as a structure for organising health care for chronic
conditions. The four components of this model are (1) self-management support (2)
delivery system design (3) decision support and (4) clinical information systems.
Particularly in the USA, the CCM has been used extensively to improve chronic disease
management.
In response to the growing prevalence of chronic diseases world-wide, the WHO formed
an ‘Observatory On Health Care for Chronic Conditions’ which reviewed the CCM and
its relevance and acceptability for low-income countries. The CCM was revised and
enlarged into the ‘Innovative Care for Chronic Conditions Framework’ (ICCC).22 In this
framework, too, self-management plays an important role, is enlarged to include the
patients’ family and is found in the component of “prepared, informed, and motivated
patients and families”. According to the ICCC patients and families should be informed
about their condition, including expected course, complications, strategies to prevent
complications and how to manage symptoms. They should be motivated to change to
healthy behaviours, adhere to therapy and self-manage their condition. They should lastly
be prepared to manage their condition at home, which includes “having the necessary
medications and medical equipment, self-monitoring tools and self-management skills”.23
Self-management programmes: Examples
Especially in the Anglo-Saxon world, there is an abundance of disease-specific self-
management programmes, managed either by a disease-specific self-help charity or by
To explain the meaning of this term, Lorig gives as an example a person with back pain who
i
needs to change the way he or she gardens or participates in favourite sports.16 Another example
would be the housewife with diabetes needs to discover new food items and learn new ways of
preparing the meals.
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 10
11. individual health care organisations (in the US). Yet, as far as we are informed, there are
only two examples where national health policies are aiming at integrating self-
management programmes in the public health systems and implementing them
nationwide. The more important for our purpose of lesson-learning is the Expert Patients
Programme in the UK. The second is the Sharing Health Care Initiative in Australia.
United Kingdom: The Expert Patients Programme
The term ‘expert patients’ has become widely known due to the thus labelled policy
initiative of the UK’s Department of Health, described in its publication in 2001 “The
Expert Patient: A New Approach to Chronic Disease Management for the 21st Century”.24
It is not a new development in itself but the UK became the first country to undertake
and fund a national initiative to establish self-management as one pillar of the national
health system. Expert patients have been defined as people who
“understand that the quality of their lives is primarily up to them;
believe they can exert significant control over their own lives; are
determined to live a healthy life despite their chronic condition; are
realistic about the impact of their disease; and have worked out what
services exist and how they can be accessed.”25
The notion of patients as experts is based on the observation that many patients with a
chronic condition seem to know more about it than the health professionals who are
treating them. These patients have an insider’s knowledge about their illness and, based
on this, make day-to-day decisions about it.26 However, not every chronic patient
becomes an expert in their disease, not everyone is managing their disease in a way that
enhances well-being. Due to the predominant pattern of doctor-patient relationships in
the western societies, in which the patient is a passive recipient of expert advice and
treatment from his/her doctors, many chronic patients do not develop the skills to
optimally self-manage their disease as
“the success of medical science has engendered a passivity in the
minds of the lay public which has flattered the doctor’s sense of
power and self-esteem. It has also caused people to assume less and
less responsibility for what happens to their bodies and their minds.”14
In the UK, where according to the Department of Health 17.5 million adults live with a
chronic condition,24 the way to a nationwide expert patient programme was paved by
health related charities, which started to include the Stanford chronic disease self-
management course in their range of activities in the mid nineties. The first to develop its
own self-management programme based on the Stanford model in 1994 was the charity
‘Arthritis Care’. Since then, a number of other charities, such as the ‘Manic Depression
Fellowship’, the ‘Multiple Sclerosis Society’, the ‘British Liver Trust’ and ‘Diabetes UK’
to name but a few, have accumulated several years of experience in training people with
chronic conditions in self-management using the CDSMP manual.27
In 1998, the British Department of Health started to support financially an action
research organised by the Long-term Medical Conditions Alliance (LMCA), whose remit
it was to develop knowledge about self-management and increase the number of self-
management programmes in the UK. In its 1999 White Paper “Saving Lives: Our Healthier
Nation”, the Department of Health announced for the first time its plan of an Expert
Patients programme “which will help more people with chronic illness to take control
over the management of their condition”28.
The introduction of self-management programmes into the NHS began in 2001 with a
pilot phase of three years which saw the start and evaluation of local self-management
programmes. Today, self-management is being mainstreamed within all NHS areas, an
activity that is foreseen to last until 2007.24 This development has followed a pattern
typical for the UK where the voluntary sector has the unique function of pioneering and
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 11
12. experimenting with new ideas, with the underlying assumption that the state will step in
and mainstream the service once this has been shown to work.29
In each of the country’s 28 strategic health authoritiesi the Expert Patients Programme of
the NHS employs a certain number of lay people with chronic illnesses to train others in
self-management skills. All of these trainers are managed at national level by two
principal trainers who are answerable to the Department of Health. Additional volunteer
tutors are recruited through their participation in self-management courses. A system of
quality assurance ensures that the courses are run in a standardised way.30
While the initial set-up of a national team of self-management trainers and tutors did not
intend to establish a new professional group, it has given rise to questions about new
health workforce configurations within the NHS. Currently the programme is still very
young and the relationship between trainers and tutors and the different stakeholders
within the NHS does not yet seem to be clearly delineated. Yet, according to some
observers, the group of expert patient trainers is showing signs of establishing a new
‘professional project.’ii Trainers have, for example, attempted to set up conditions for
referral to their courses which do not involve other professional groups. According to
Kennedy this might be seen as a first step towards gaining a monopoly over the right to
work in a specialised way with a particular group of clients.32 Still, how the self-
management trainers and tutors will develop as professional groups within the NHS is
still uncertain and will depend not only on policy decisions within the Department of
Health but also, crucially, on the degree of collision with the interests of other
professional groups, such as specialist chronic care nurses.32
Currently the National Primary Care Research and Development Centre is carrying out research
projects to evaluate process issues, clinical outcomes and personal experiences related to
the introduction of the Expert Patients Programme in the NHS.iii
Australia: The Sharing Health Care Initiative (SHCI)
In 1999 the Australian Department of Health and Ageing initiated a new primary care
package for older citizens and those with chronic conditions. Part of this package was
the SHCI. The objective of the SHCI is to test a range of self-management models by
supporting twelve demonstration projects throughout the country in order to identify
models that could be suitable for the Australian health care system.33
From internet research it seems as if the Australian initiative is putting less emphasis on
the role of patients with chronic disease as tutors for other patients and more on the
shared responsibility for disease management between patient and physician. The
Flinders Self-Management Model, which has been proposed for introduction in the
health system, emphasises very much the enhancement of the individual patient’s self-
management skills but does not mention anything on the active role chronic patients can
assume with regard to teaching and training of other people.34
Strategic Health Authorities are decentralised levels of the NHS.
i
Larson described a professional project as “the efforts of members of an occupation to work
ii
collectively to increase their status and economic prospects”.31
The National Primary Care Research and Development Centre was established by the
iii
Department of Health in 1995 to undertake a programme of policy related research in primary
care. For their research on the expert patients programme see their website:
http://www.npcrdc.man.ac.uk/ResearchDetail.cfm?ID=117#Top
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 12
13. Self–management programmes: Evaluations and opinions
Evaluations
Both described national programmes are still in the process of being evaluated, and until
now we only have the results of an internal evaluation of the pilot phase of the Expert
Patients Programme in the UK. This evaluation shows that the Programme provides
“significant numbers of people with long term conditions with the confidence and skills
to better manage their condition on a daily basis” and “significant reductions in service
usage”, i.e. in General Practitioners’ consultations, outpatients visits, Accident &
Emergencies attendances and physiotherapy use.35 For the mainstreaming phase of the
programme only preliminary process evaluation results of the Expert Patients
Programme have already been published. The recommendations for implementing the
Expert Patients Programme into the NHS emphasise the importance of giving it a higher
profile with several stakeholders, such as the decentralised health authorities and
physicians.36
There is, however, already a substantial body of research on various aspects of other self-
management programmes. Most literature on self-management focuses on disease-
specific programmes, less on more broadly-based programmes integrating self-
management into health care systems.
Most evaluations of self-management programmes focus on improvements in the core
self-management elements from the patient’s perspective, such as for example increased
knowledge, skills and sense of self-efficacy. Self-efficacy is regarded as a cognitive
predictor of health behaviour and has been proven to be related to improved health
behaviour, motivation and well-being. 37-39
Outcome measurement of self-management programmes has focussed on health status
and health service utilisation. This has most extensively been researched in disease-
specific programmes, such as diabetes40-43, asthma22 and arthritis44. Fewer evaluations
have focussed on generic self-management programmes for various chronic
conditions.45-47 Overall, experts agree that there is a sufficient body of evidence for
positive outcomes of self-management programmes with regard to enhanced self-
efficacy and healthy behaviour as well as health status and health service utilisation.24;27
These outcomes are often contrasted with the results of traditional patient education.
Bodenheimer, for example, presents a CDC review of the effects of patient education on
the clinical outcomes of diabetes care, which indicates that patient education by itself
(without a component of self-management) is not sufficient to improve clinical
outcomes and that greater patient knowledge does not correlate with improved glycemic
control. 22 A Cochrane review of patient education in asthma of adults has shown similar
results, i.e. no improvement in health outcomes through patient education alone.22 In
contrast, Lorig et al. report a statistically significant improvement in health behaviours in
a cohort study of a generic chronic disease self-management programme.47 Tang found
significant improvements in body mass index, total cholesterol and high- and low-
density lipoprotein among the participants in a diabetes self-management programme.43
What is interesting for our purpose is that many studies report reduced health service
utilisation, a fact that is making self-management attractive for many health policy
makers.11 Lorig for example have assessed the effect of a self-management programme
on four types of health care utilisation, i.e. visits to physicians, visits to hospital
emergency departments, number of hospitalisations, and number of nights spent in a
hospital. They noted a reduction in the number of visits to emergency departments and
trends towards fewer visits to physicians and fewer days in hospital.47 Other studies have
confirmed these effects of self-management programmes. Kemper presents studies
showing that already in the 1980s the effects of various interventions to encourage, what
Kemper calls self-care include a reduction in health care utilisation for various
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 13
14. conditions.48 Fewer emergencies and hospital admissions by people who attend self-
management courses have also reduced health care cost in some cases.46
One limitation of the research literature that could be assessed for this report is that it is
only looking at the impacts of once-off self-management interventions. Thus, effects of
self-management courses are observed only for a limited time after the intervention. The
selection of study participants should also be taken into account. In all the studies we
know of, participants were aware of being in a study context and had formally agreed to
partake in the study-related activities for the entire duration of the study. Therefore we
do not yet know much about the effectiveness of ‘real-life’, long-term self-management
programmes such as is being introduced in the NHS.
Another limitation is that the vast majority of self-management studies have been
conducted in high income countries with well-functioning health care infrastructures.
This bias is certainly explained by the fact that self-management programmes, in the full
sense of the Stanford model, have only been introduced in these countries and not yet in
low-income countries.
We know of one study that evaluates a chronic disease self-management programme in
Shanghai, China. This study found that the CDSMP was “acceptable culturally to
Chinese patients (…) improved participants’ health behaviour, self-efficacy, and health
status and reduced the number of hospitalizations (…)”.45
Judging from the number of publications, self-management programmes also seem to
focus mainly on the ‘classic’ chronic diseases, such as diabetes, coronary heart disease
and asthma. Thus we only found one article on HIV/AIDS and self-management. This
article presents the results of a randomised controlled trial to evaluate the acceptability,
practicality and short-term efficacy of a self-management programme.49 The study results
confirm that self-management is acceptable, practical and efficacious in the short-term
for a wide range of chronic diseases, including HIV/AIDS.
Opinions
According to our knowledge no research has been conducted on why patients choose or
choose not to participate in a self-management programme. Therefore we cannot say
anything about the likelihood of a majority of people with a chronic condition wanting
to be involved in self-management initiatives. It is very much possible that a substantial
number of people prefer to remain within the traditional patient-doctor relationship. Yet,
the success of self-management programmes in the eyes of patients who have joined
them is unquestionable. Many interviews have been conducted with patients who are
active in this kind of programmes, be it as expert patient trainers, tutors or course
participants. All of them report finding the self-management support very useful, and for
many the activity as expert patients and the participation in self-management groups has
meant a significant improvement in well-being.32;50-53;53
Health policy makers in the UK and Australia have expressed their support for self-
management programmes, partly on the basis of the body of evidence for improved
health outcomes in chronic conditions, partly because they promise cost-saving
opportunities for their national health systems.24;54
The most critical attitude regarding self-management and the expert patients programme
seems to prevail among medical doctors, even though no research of an individual self-
management programme has looked at the aspect of physician perspectives. A few
articles and preliminary evaluation results concerning the expert patients programme
indicate that many physicians are critical with regard to the introduction of the
programme in the NHS. Thus, Jardine quotes a survey showing that 50% of general
practitioners in the UK feared the expert patients programme would mean more work
for themselves. Another fear is that patients will “become troublemakers”, questioning
the doctor’s advice and suggesting alternative treatment options etc.51 The preliminary
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 14
15. results of the national evaluation of the Expert Patients Programme mention the “lack of
engagement by local health professionals” as one factor contributing to difficulties in
recruiting chronic patients to the courses. Interviews showed that physicians were often
critical towards the merit of lay-led disease management programmes and feared their
competition with professional approaches to chronic condition management.36
In the UK, the Royal Pharmaceutical Society regards the Expert Patients Initiative as a
very promising development which will offer “a huge opportunity for pharmacists to
provide high quality information and help patients to become experts”.52 The society’s
vision reaches from the community pharmacy becoming a more important point of
contact with the primary health system for the expert patient to the active participation
of pharmacists as resource persons in Expert Patients Groups.52
In conclusion we can say that the expert patients programme as a nation-wide
extension of the concept of self-management holds the promise of increasing the well-
being of people living with many diverse chronic conditions while at the same time
reducing the burden of chronic care on the ‘traditional medical infrastructure’. It looks
very well possible that new professional cadres, who are living with a chronic illness
themselves, will take charge of many aspects of chronic care. However, early evaluations
have shown that the integration of this new programme into the NHS will require careful
negotiation with the ‘traditional stakeholders’ such as physicians and specialised nurses.
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 15
16. B. Roles of People Living with HIV/AIDS in ART
programmes in the South
We have taken a closer look at the expert patient concept for chronic diseases because
we think it might hold some promise regarding HIV/AIDS care and treatment in
developing countries with severe HRH constraints. In these settings, it is of paramount
importance to find ways of reducing the burden of HIV/AIDS related work on the
scarce stock of medical doctors and qualified nurses. We think it worth exploring the
possibility and potential of recruiting expert patients from the big pool of PLHA in order
to supply ART programmes with the much needed HRH. For this purpose we want to
examine the different current roles of PLHA in ART programmes in low-income
countries and then examine if and in how far the concept of expert patients could help
increase and improve their involvement.
Origin of PLHA self-empowerment
Our literature research has shown that in many countries PLHA are involved in all areas
of a comprehensive response to HIV/AIDS, i.e. in health promotion, prevention, care
and treatment and impact mitigation, and additionally in programme management and
policy-making. This present state is the consequence of a self-empowerment process that
began with the establishment of the first association of PLHA, the so-called People With
AIDS(PLA) self-empowerment movement, in the United States in 1983. Globally, an
international network of people living with HIV was initially formed in 1986, and later
became the Global Network of People Living with HIV/AIDS (GNP+). On the African
continent the first PLHA association, The AIDS Support Organisation (TASO) was
established in Uganda in 1987.
Today most countries have at least one PLHA association, and the majority of
HIV/AIDS programmes in low-income countries are run with some kind of
involvement of PLHA.
The concept that PLHA ought to participate in the decisions that directly affect their
lives dates back to 1983. At the second national AIDS Forum in the US, the PLA self-
empowerment movement demanded that PLHA “be involved at every level of decision-
making and serve on the boards of directors of provider organizations [and] be included
in all AIDS forums with equal credibility as other participants, to share their own
experiences and knowledge”.55
The principle of the ‘Greater Involvement of People Living with HIV/AIDS’ (GIPA)
was formally recognized at the 1994 Paris AIDS Summit, and in 2001, the United
Nations Declaration of Commitment on HIV/AIDS endorsed the GIPA principle.56
The WHO, in the guiding principles of their ‘3 by 5’ initiative, postulates the “Centrality
of People Living With HIV/AIDS. The Initiative clearly places the needs and
involvement of people living with HIV/AIDS at the centre of all of its programming”.57
Activities of PLHA in the fight against HIV/AIDS
Looking at the roles of PLHA in the fight against HIV/AIDS we can distinguish
between the ‘use’ that is being made of them by individual projects and programmes and
the activities undertaken by separate PLHA groups or associations. The majority of the
latter seem to have been initiated as mutual support groups of people affected by
HIV/AIDS who have subsequently increased their range of activities.
Our internet and literature research of national and other HIV/AIDS programmes as
well as PLHA associations in low-income countries aimed at identifying all areas in the
fight against HIV/AIDS in which PLHA are currently involved. From this research it
seems that the main fields of PLHA involvement are health promotion and prevention.
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 16
17. The Centre for AIDS Development Research & Evaluation (CADRE) has come up with
similar findings in their study of AIDS-related activities of 88 community organisations,
many of them PLHA associations, involved with HIV/AIDS in South Africa. Almost
90% of these organisations were involved in prevention activities, 70% provided care
and support services, more than 60% provided training and less than 28% were involved
in treatment (for tuberculosis, sexually transmitted infections , opportunistic infections
or ARVs), mainly focussing on treatment literacy.58
Health promotion and prevention. Many individual HIV/AIDS programmes involve
PLHA associations or smaller PLHA volunteer groups in population-based education
and awareness campaigns. This is done in settings as diverse as for example the urban
Médecins Sans Frontières (MSF) project in Khayelitsha, South Africa, which is collaborating
with the Treatment Action Campaign (TAC) in education and community awareness
campaigns59 and the rural MSF project in Thyolo, Malawi, which is involving hundreds
of community volunteers, many of whom are HIV positive, in prevention activities.i A
hospital-based ART project in Kenya has hired some of their HIV-infected patients for
various tasks, among them community education.60 TASO involves PLHA in their
projects throughout Uganda for the same task of awareness building.61 Moreover, dozens
of PLHA associations in various countries are involved in a range of promotion and
prevention activities that are not necessarily linked to a more comprehensive medical
programme.ii Health promotion activities run by PLHA aim at the community at large as
well as at HIV positive people in particular. For example, with community awareness
campaigns, adolescent sexual health education and condom promotion PLHA
associations directly target healthy behaviours and fight stigma related to HIV/AIDS.
The prevention and health promotion activities aimed at HIV positive people include for
example information about nutrition, common opportunistic infections and the nearest
health services providing ART etc.
Care and Treatment. The majority of programmes providing care and treatment of
HIV/AIDS, including ARVs, involve PLHA in some way or another. It seems that
usually these PLHA are directly linked to the treatment site, which means they belong to
its HIV-positive patient pool and have volunteered to become actively involved in the
continuum of HIV care which is often referred to as ‘peer support’. The most common
tasks of PLHA have to do with treatment adherence support. The MSF project in
Khayelitsha, for example, has several peer support groups differentiated according to the
duration of treatment of its members.59 TAC is also very active in the promotion of
treatment literacy.63 In Chiradzulu, Malawi, where MSF has another ART project, several
PLHA have formed their own support group for adherence, which is assisted by
professional counsellors.64 In Zambia, the HRH crisis has prompted the national
HIV/AIDS programme to train PLHA and other community members to address issues
such as adherence and supportive counseling. The MoH has started to contract PLHA
groups and community -based organisations to support treatment literacy.65;66 In the
ART projects of MSF in Cambodia, PLHA volunteers are used to track down patients
on ART who have not shown up for their appointments.iii
Several HIV/AIDS projects involve PLHA in their counselling activities. Some employ
individual HIV positive people as counsellors for their VCT programme others for
adherence counselling. In Thyolo, it is the home based care (HBC) volunteers, many of
whom are HIV positive, who have been trained in early HIV case detection and who
Personal communication with MSF project staff in Thyolo, Malawi
i
A global directory of PLHA association, published by USAID, lists PLHA associations for most
ii
African and Asian countries, the majority of which are involved in prevention, promotion and
advocacy activities.62
iii Personal communication with MSF project staff in Siem Reap, Cambodia
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 17
18. routinely refer patients to the project’s VCT and ART services. More than two thirds of
the project’s VCT clients have come after encouragement from a HBC volunteer.67
According to personal information, it seems that TASO, the biggest PLHA association
in Uganda, is not only organising VCT but planning to extend their VCT centres to
include the offer of CD4 testing.
Other tasks of PLHA in this category of the continuum of care for HIV/AIDS include
home based care (HBC) for AIDS patients. The PLHA volunteers usually receive some
training from the formal health facilities or specialised NGOs in HIV related symptoms
and opportunistic infections (OIs) and are equipped with some basic drugs and materials
for treatment. The most extensive collaboration we know of is the one we observed in
Thyolo, Malawi. Here, MSF has built on existing community support groups, provided
them with training in some medical aspects of HBC and is now collaborating with the
HBC teams for early case detection. The HBC network has broad community coverage
and serves as a supplier of clients for VCT and patients for initiation of ART.67 There are
other examples such as the national Red Cross Societies in Uganda, Botswana,
Mozambique and South Africa, who employ PLHA as volunteers for HBC, prevention
and awareness building activities.68 Malawi’s Global Fund Project “The national response
to HIV/AIDS” plans to develop a national HBC infrastructure, by empowering and
investing in existing community-based PLHA groups and encouraging the creation of
new ones.69 As the majority of PLHA associations were founded with the aim of
providing mutual support, HBC remains one of their core activities. We have found
PLHA groups involved in HBC in most African countries affected by HIV.
While it has become relatively commonplace for HIV/AIDS projects to involve PLHA
in some way in the administration of treatment for chronic HIV problems and OIs, we
have not come across any examples of direct PLHA involvement in the provision of
ART. Their involvement in treatment activities was restricted to treatment literacy and
adherence monitoring and support. An interesting study by Sidaction describes this
situation for CBOs and PLHA groups in Kenya where many community-based
structures are filling gaps in the public health system by providing support and care for
the population in remote rural areas.70 Even though PLHA groups are extensively
involved in HBC, most of them do not include access to ART. The authors write that
there would be a real possibility of HBC volunteers assuming different roles and
becoming agents for treatment access if they are provided with the necessary allowance
and training. Yet, “PLHA have generally been called upon to offer services on a
volunteer basis, leading to a high turnover of experienced and qualified staff”, a potential
that could be tapped for ART provision if properly supported.70
The advocacy work of PLHA associations can also be grouped under treatment as it is in
most cases related to access to ART. The most known and vocal groups are the
Treatment Action Campaign (TAC) in South Africa and the Thai Network of People
Living with HIV/AIDS (TNP+), who have both been campaigning for increased access
to treatment for many years.71;72
A recent survey of community-based organisations facilitating access to ART in Africa
shows that 70% of organisations are involved in ART access issues, around 60% in
psychosocial follow-up of ART patients and in training on ARTs. 50% were involved in
the medical follow-up of ART patients and 26% were providing ART prescriptions.73 A
closer look at the organisations providing ART revealed that they all employed
professional medical staff for the prescription of ARVs. We did not find any
involvement of PLHA in the prescription process.i
Still, as most organisations do not have their own website we had to rely on the summaries of
i
activities by Sidaction. These might not do justice to the entire range and arrangements of each
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 18
19. Impact mitigation. Many PLHA, be it as individuals or be it as groups, are engaged in
impact mitigation activities such as care of and support for orphans and ‘Other
Vulnerable Children’. Nutrition support and household assistance are also part of many
PLHA associations’ catalogue of activities. Several PLHA have a broad offer of services,
ranging from positive living seminars for HIV positive people to seminars in income
generating activities.62
Other areas of PLHA involvement. In many countries PLHA have a voice in
HIV/AIDS related policy making. The importance of their involvement on this level
has been frequently emphasised by influential organisations such as UNAIDS and
WHO. An important step forward was the requirement by the Global Fund to Fight
AIDS, TB and malaria, to include representatives of civil society in general and of people
affected by HIV/AIDS in particular in the country coordinating mechanisms (CCMs),
which play a crucial role in the development of project proposals for funding by the
Global Fund. Particularly in South Africa, several PLHA associations offer legal
support to HIV positive people in cases of workplace discrimination or insurance and
pension issues.
A. versus B. PLHA as expert patients: An untapped
resource?
Relevance of self-management for comprehensive HIV/AIDS care
In the first part of our review we could present examples of how self-management as a
component of chronic care in high income countries can have a positive influence on
healthy behaviour and well-being of people with a chronic illness as well as improve
health outcomes and service utilisation. In the second part we showed the various areas
of health promotion and prevention, care, treatment and impact mitigation where PLHA
in low income countries with high HIV/AIDS burden are currently involved.
In this third part we want to argue that conceptualising the involvement of PLHA as
‘expert patient work’ could potentially improve outcomes for the HIV positive
individuals in all the listed areas, while crucially reducing the workload of HIV/AIDS for
medical personnel. While the objective of expert patient programmes for chronic
diseases in high-income countries is not in the first place a reduction in health service
utilisation, there is sufficient evidence that expert patient programmes do reduce health
service utilisation while improving health outcomes. We argue that this aspect of expert
patient programmes holds interesting potential for the context of ART in settings of
severe HRH shortages and that it would be worth exploring further existing PLHA
initiatives that could possibly progress towards an expert patients programme.
Since it is the aspect of care and treatment for PLHA that is most intensive in its use of
medical doctor time, we want to look at the potential role of PLHA as expert patients in
reducing health service utilisation for ART in developing countries. In order to reduce
measurably medical doctor contacts, an expert patient programme for ART in HRH -
constrained settings would have to focus more than its predecessors for other chronic
conditions in high HRH density countries on medical treatment as part of self-
management.
organisation’s activities. It might be interesting to do more in-depth research of the ART delivery
models used by the community organisations that claim to provide ARV prescriptions.
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 19
20. Aspects of current PLHA involvement in ART delivery related to self-
management
Some features of ART programmes have to do with patient empowerment and could be
building blocks for an expert patients programme. First, there are the peer support
groups of PLHA, which have been initiated in all the ART delivery projects we know of.
The formation of patient groups for mutual support is the basis of any expert patient
programme. However, the peer support groups linked to ART projects are, as far as we
know, not receiving the professionalized, structured support of expert patient groups but
rather function as traditional self-help groups. While it is common for health personnel
to organise information sessions with the PLHA support groups, we have not come
across a systematic training approach for PLHA group members. Second, the emphasis
of ART projects on intensive VCT and ART counselling can have aspects of individual
self-management training, in that it can be problem-based and encouraging for the
patient. However, from several talks with counsellors we have got the impression that in
many cases the focus of counselling is mainly on traditional patient education rather than
self-management skills. Third, HBC delivered by PLHA can be seen as another building
block for an expert patients programme. Normally, HIV positive HBC volunteers
receive training from the health service they are related to. Their first-hand knowledge as
people directly affected by the disease is thus enhanced by physiological and medical
background knowledge. These people are therefore able to understand the people under
their care not only to a certain extent medically but also emotionally and socially as they
themselves are sharing similar experiences as PLHA.i However, the HBC programmes
we have come across are only comparable with expert patient initiatives to the extent
that PLHA are trained to become experts in certain fields of HIV-related problems.
Apart from this aspect, HBC programmes rather follow the traditional pattern of health
service provision, in which some individuals are trained to treat others. In contrast, in
expert patient programmes the tutor, who has a chronic disease himself, is not only
trained in disease-specific medical knowledge but also in teaching self-management skills
to others with a chronic disease.
Conclusion: Possible ways of tapping the pool of PLHA expert patients?
In order to make the delivery of ART less medical doctor intensive, it might be worth
developing the potential of PLHA beyond their use in support functions as described
above. What is currently lacking is a conceptualisation of their possible professional
involvement as expert patients.
As the previous chapters have shown, hundreds of PLHA support groups exist in most
of the countries with high HIV/AIDS burden. Many of these groups are the outcomes
of community-based initiatives and have accumulated many years of experience dealing
with all aspects of HIV/AIDS. The capacities of these groups could be systematically
explored in order to identify their potential as expert patient resources. In this way it
might be possible to identify selected individuals and provide them with the specific
medical and psychosocial training necessary for fulfilling the role of expert patient tutors.
Any expert patient programme would have to be context-specific and require the careful
identification of possible professional tasks to be fulfilled by the PLHA. In a
The importance of personal experience has also been recognised for other areas. An example
i
where it plays a crucial role is the Belgian initiative to fight poverty, in which the active
participation of the poor in poverty reduction strategies is seen as a necessary condition for their
success. The initiative has established a new professional cadre, the “Experience Experts in
Poverty and Social Exclusion”. These are empowered poor people who have been trained to
bridge the gaps between the traditional poverty-reduction structures and their target group, the
poor themselves.74
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 20
21. participatory process, PLHA groups and the medical- and paramedical staff could
together examine the whole range of activities related to HIV/AIDS care, treatment and
support with the aim of identifying each partner’s role in this continuum of care.
In order to make ART delivery less doctor intensive, it would be important not to look
only into non-medical HIV/AIDS related tasks but also to explore the possibilities of
PLHA expert patients assuming responsibility for medical tasks such as CD4 counts and
follow-up of uncomplicated patients on ART. In certain contexts it might even be
considered to go beyond this and involve expert patients in the initiation of ART.
Extending the expert patient idea could mean creating national PLHA expert patient
networks. Such networks could be more than an offspring of individual ART delivery
projects but be entirely run by PLHA. Its institutions may then become the first and
most frequent points of professional care for PLHA.
Certainly, the development of such expert patient networks would require good
communication and collaboration with the traditional health service infrastructure for
which it would pose a number of new challenges. Traditional paramedical training
institutions, for example, would have to expand their course offers and prepare special
tutors for the running of training courses for expert patient tutors. Also, as we have
described in relation to the expert patient programme in the UK, apprehension from the
established medical (and paramedical) interest groups may pose a serious barrier for the
development of a PLHA expert patient programme. 36;51;75 Therefore, the development
of such a programme would need to be context-specific and from the start to be
developed with the participation of all stakeholders.
We argue that the traditional medical model of ART delivery is incompatible with the
severe HRH shortages in many African countries with high HIV prevalence, and that
especially the potential reduction in the use of health care makes the expert patient
approach an interesting option for HIV/AIDS care.
Kober&Van Damme_Expert patients for ART_Lit review_Mar 06 – page 21
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