This document discusses the connected experiences of patients in the 21st century. It describes how being a long-term patient impacts people physically, psychologically, socially, and financially. It outlines how embracing online tools and connecting with other patients through social media and online communities can help patients feel less isolated and anxious. The document advocates for increased patient engagement with healthcare providers and cites data on growing patient use of technology and online resources to manage their health conditions.
Accessing compassionate hospice palliative care across the continuum: leadership approach - evaluation of the first patient-developed website on end of life education
Feed the Minds supports a holistic and compassionate approach to HIV/AIDS that recognizes the local context. It finds the ABC framework limiting and prefers the SAVE framework which emphasizes: [S]afe practices appropriate to each situation, [A]ccessing appropriate interventions, [V]erification of testing without stigma, and [E]ducation through discussion of accurate information to support informed decisions. Feed the Minds will only support HIV/AIDS projects demonstrating this holistic and compassionate approach based on current information.
Tell me and I forget, teach me and I remember, involve me and I learnSimon R. Stones
This presentation was delivered at the Glasgow Caledonian University School of Health and Life Sciences Research Seminar, to help inform the group who are currently developing their strategy for patient and public involvement and engagement.
This document discusses global health and the role of primary health care. It notes that many groups are involved in global health including NGOs, politicians, social workers, families, doctors, researchers, and private organizations. It states that primary health care plays a key role in prevention, secondary care, national policies, research, and empowering communities. The document suggests that individuals can contribute to global health through small improvements, emphasizing recruitment, lobbying, telling positive stories about primary health care, networking, teamwork, research, and strengthening local primary health care organizations. It also asks how to make patients and society more responsible and involved.
This document describes HIVSmart!, an integrated global self-testing strategy developed by Dr. Nitika Pant Pai. HIVSmart! is an app-based solution that empowers individuals to self-screen for HIV using an oral self-test, self-conduct the test, and facilitates linkages to care. It was developed in Canada and tested/evaluated in South Africa. HIVSmart! won an ASAP Open Access Innovation Award in 2015 for innovating HIV self-testing. Current work includes adapting HIVSmart! for use in Canada and ongoing studies evaluating self-testing.
This document discusses the connected experiences of patients in the 21st century. It describes how being a long-term patient impacts people physically, psychologically, socially, and financially. It outlines how embracing online tools and connecting with other patients through social media and online communities can help patients feel less isolated and anxious. The document advocates for increased patient engagement with healthcare providers and cites data on growing patient use of technology and online resources to manage their health conditions.
Accessing compassionate hospice palliative care across the continuum: leadership approach - evaluation of the first patient-developed website on end of life education
Feed the Minds supports a holistic and compassionate approach to HIV/AIDS that recognizes the local context. It finds the ABC framework limiting and prefers the SAVE framework which emphasizes: [S]afe practices appropriate to each situation, [A]ccessing appropriate interventions, [V]erification of testing without stigma, and [E]ducation through discussion of accurate information to support informed decisions. Feed the Minds will only support HIV/AIDS projects demonstrating this holistic and compassionate approach based on current information.
Tell me and I forget, teach me and I remember, involve me and I learnSimon R. Stones
This presentation was delivered at the Glasgow Caledonian University School of Health and Life Sciences Research Seminar, to help inform the group who are currently developing their strategy for patient and public involvement and engagement.
This document discusses global health and the role of primary health care. It notes that many groups are involved in global health including NGOs, politicians, social workers, families, doctors, researchers, and private organizations. It states that primary health care plays a key role in prevention, secondary care, national policies, research, and empowering communities. The document suggests that individuals can contribute to global health through small improvements, emphasizing recruitment, lobbying, telling positive stories about primary health care, networking, teamwork, research, and strengthening local primary health care organizations. It also asks how to make patients and society more responsible and involved.
This document describes HIVSmart!, an integrated global self-testing strategy developed by Dr. Nitika Pant Pai. HIVSmart! is an app-based solution that empowers individuals to self-screen for HIV using an oral self-test, self-conduct the test, and facilitates linkages to care. It was developed in Canada and tested/evaluated in South Africa. HIVSmart! won an ASAP Open Access Innovation Award in 2015 for innovating HIV self-testing. Current work includes adapting HIVSmart! for use in Canada and ongoing studies evaluating self-testing.
This presentation was delivered as part of a seminar to the Child Health Evaluative Sciences (CHES) Research Group, based at The Hospital for Sick Children (SickKids) in Toronto, ON, Canada. The presentation focused on the importance and some of the practicalities of involving young people in research.
Social Media In Healthcare How To Communicate With Impact #MASCC19Marie Ennis-O'Connor
Marie Ennis-O'Connor is a social media strategist who is passionate about using social media in healthcare. The document discusses how patients are using social media and the internet to research their medical conditions, and how healthcare providers can leverage social media to engage with patients and disseminate credible health information. It provides tips on developing a social media strategy, including determining goals, defining the target audience, choosing appropriate channels, creating compelling content, and measuring the impact. The overall message is that social media is an important tool for healthcare professionals to connect with patients and join online health discussions.
The document discusses the comparability of patient-reported outcome (PRO) data between populations and settings. It raises two key issues with assuming comparability. First, PRO instruments may not adequately capture what attributes of health are important across cultures due to conceptual and linguistic differences. Second, how individuals perceive and report their own health can depend heavily on social and cultural factors like expectations of health, access to healthcare, and education levels. The document cautions that relying solely on self-reported health data to assess healthcare or medical strategies without accounting for these cultural differences could provide a misleading picture.
The document discusses the current state of the COVID-19 pandemic globally and in the United States. It provides statistics on total cases and deaths. It then summarizes information on the new Omicron variant, including its high transmissibility and mutations. Experts comment on vaccines and boosters providing protection against severe illness from Omicron. The document also summarizes perspectives from healthcare leaders on challenges during the pandemic, such as staffing shortages, balancing telehealth and in-person care, and supporting staff well-being.
Childhood Tuberculosis and Community Healthcare_Anne Detjen_5.8.14CORE Group
This document discusses integrating tuberculosis (TB) screening and management into community-based primary care for children. It provides the following key points:
1) Children with TB often first present to primary care services, so engaging these services can help identify TB cases and contacts through simple screening questions.
2) Existing community case management frameworks for other diseases can be adapted to include basic TB interventions to increase suspicion of TB and identify at-risk children for referral.
3) Pilot testing is needed to evaluate how many TB suspects and cases in children can be identified by adding simple TB screening questions to integrated community case management algorithms.
1) The document discusses enhancing knowledge about Hepatitis-C among people who inject drugs (PWID) in Bangladesh, as PWID are highly vulnerable to Hepatitis-C infection.
2) According to a survey of 897 PWID in Bangladesh, only 26% had ever heard of Hepatitis-C, despite high rates of infection.
3) The conclusion recommends that HIV prevention programs in Bangladesh should provide more training and emphasis on Hepatitis-C for harm reduction outreach workers and PWID, to increase awareness and screening.
Strategies and Tactics to Leverage Social and Digital Media in Clinical Rese...Inspire
A pharmaceutical company partnered with Inspire, a social network for health, to better understand idiopathic pulmonary fibrosis (IPF) patients. Through surveys of IPF patients on Inspire, the company found that around 70% said their biggest issue was the "lack of therapies which make me feel better." When asked about clinical trial participation, 80% saw the comprehensive evaluation as a benefit, while around 20% saw the chance of a placebo as a drawback. The presentation argues that social networks provide a way for patients, particularly those with rare diseases, to be engaged, informed and have their voices heard by industry to accelerate research.
Poster slide show - PRIME Annual Meeting 2020angewatkins
The document summarizes the aims, activities, and plans of multiple research work packages within an organization over the past year and for the forthcoming year. Some of the key highlights mentioned include securing funding for trials and studies on topics like antibiotic prescribing and COVID-19, submitting applications for funding new research, and completing or making progress on ongoing research studies. The work packages plan to continue their research programs, pursue additional funding, and engage with partners to address healthcare needs over the coming year.
Jo Protheroe - Health Literacy and Health InequalityHLGUK
The document discusses health literacy and defines it as "the personal characteristics and social resources needed for individuals and communities to access, understand, appraise and use information and services to make decisions about health." It notes that resources and policy changes to improve health literacy must be meaningful, realistic, raise awareness, involve user testing, and develop and evaluate interventions. The document also announces an upcoming one-day conference on health literacy in Glasgow in March 2016 that will address health inequalities and welcomes applications for oral presentations and posters on related research, development, and practices.
This document discusses approaches to embedding health literacy in health and social care systems. It suggests deciding what aspects of health literacy to focus on, such as the life course or outreach programs. It also recommends ways to make health information and systems easier to use, such as redesigning materials to be jargon-free. Building health literacy capabilities through education and training is emphasized. Opportunities for improving health literacy during service contacts should also be taken. The impact of efforts should be measured using understandable and meaningful metrics.
Survillance and notification of communicable diseasemubeenButt5
Ongoing, systematic collection, analysis and interpretation of health data.
Surveillance and notification of communicable disease
1-Closely integrated with the timely dissemination to those who need to know.
Application of the data to preventing and controlling disease.
2-Authoritative or urgent, formal or legal notice.
The action of notifying someone or something.
Something that gives official information to someone : the act of notifying someone.
3-Monitor closely to all patients.
Collect patient’s data for clinical decision making.
Monitor different diagnostic tests and lab investigations if needed.
Implement interventions on patients and evaluate for the outcomes.
To conduct researches nurse can collect data.
To assess status of community and identify problems.
To detect changes in health care practices .
Administration of general and specific health survey.
Participation in early diagnosis and treatment
Identification and notification of certain specific diseases.
Health education.
5-Crude birth rate
Crude death rate
Infant mortality rate
Morbidity rate
Perinatal mortality rate
Maternal mortality rate
Life expectancy
General fertility rate
Patient Engagement in Health Economic and Outcomes Research: Current and Future ISPOR Initiatives, presentation from the ISPOR 20th International meeting Philadelphia, May 2015, by the Patient Centered Special Interest Group
This document discusses the importance for scientists to communicate their research to the public. It notes that the public may not understand aspects of scientific research like the fact that one study is not definitive or that health messages can change. Scientists also may not understand that the public wants to understand results and their relevance in everyday terms. The document provides tips for scientists in preparing research summaries, developing key messages, and conducting interviews with reporters to help raise awareness of their findings.
1) The global population is aging and chronic diseases are increasing, putting pressure on rising healthcare costs.
2) There is a shift toward more value-based and personalized healthcare that is consumer-focused, data-driven, and moves care to lower-cost settings including homes.
3) Connected technologies and services are transforming healthcare by improving access, outcomes and experience across the health continuum.
Riff: A Social Network and Collaborative Platform for Public Health Disease S...Taha Kass-Hout, MD, MS
A hybrid (event-based and indicator-based) platform designed to streamline the collaboration between domain experts and machine learning algorithms for detection, prediction and response to health-related events (such as disease outbreaks or pandemics). The platform helps synthesize health-related event indicators from a wide variety of information sources (structured and unstructured) into a consolidated picture for analysis, maintenance of “community-wide coherence”, and collaboration processes. The platform offers features to detect anomalies, visualize clusters of potential events, predict the rate and spread of a disease outbreak and provide decision makers with tools, methodologies and processes to investigate the event.
The center for disease control and prevention databaseericajohnson1993
The document discusses the Center for Disease Control and Prevention database. It explains that the CDC collects information through surveys, interviews, physical exams, and lab tests from sites in 10 states. This information helps people understand disease risks, prevalence, and prevention. The CDC updates its information every 5-6 years by conducting new surveys.
Ethics in Pandemics - Basic Principles and Advanced Planning.pptxMike Aref
The document discusses ethics considerations during pandemics and public health emergencies. It begins with a brief history of pandemics and infectious diseases. It then covers various bioethical frameworks and methods of analysis that can be applied to challenges that arise, including principlism, narrative ethics, and casuistry. The document also discusses the differences between clinical ethics and public health ethics. It uses several case examples to demonstrate how different bioethical approaches could be applied to issues like visitor restrictions, goals of care conversations, changing PPE recommendations, and resource allocation. Throughout, it emphasizes the importance of transparency, inclusion, reasonableness and revisiting decisions as more information becomes available.
This document discusses key concepts in medical ethics including:
1. The four basic principles of medical ethics are autonomy, beneficence, non-maleficience, and justice.
2. Informed consent and respect for patient autonomy are fundamental, such as allowing patients to refuse blood transfusions based on their beliefs.
3. The principle of non-maleficience means "first, do no harm" and requires medical competence to avoid intentionally harming patients.
This presentation was delivered as part of a seminar to the Child Health Evaluative Sciences (CHES) Research Group, based at The Hospital for Sick Children (SickKids) in Toronto, ON, Canada. The presentation focused on the importance and some of the practicalities of involving young people in research.
Social Media In Healthcare How To Communicate With Impact #MASCC19Marie Ennis-O'Connor
Marie Ennis-O'Connor is a social media strategist who is passionate about using social media in healthcare. The document discusses how patients are using social media and the internet to research their medical conditions, and how healthcare providers can leverage social media to engage with patients and disseminate credible health information. It provides tips on developing a social media strategy, including determining goals, defining the target audience, choosing appropriate channels, creating compelling content, and measuring the impact. The overall message is that social media is an important tool for healthcare professionals to connect with patients and join online health discussions.
The document discusses the comparability of patient-reported outcome (PRO) data between populations and settings. It raises two key issues with assuming comparability. First, PRO instruments may not adequately capture what attributes of health are important across cultures due to conceptual and linguistic differences. Second, how individuals perceive and report their own health can depend heavily on social and cultural factors like expectations of health, access to healthcare, and education levels. The document cautions that relying solely on self-reported health data to assess healthcare or medical strategies without accounting for these cultural differences could provide a misleading picture.
The document discusses the current state of the COVID-19 pandemic globally and in the United States. It provides statistics on total cases and deaths. It then summarizes information on the new Omicron variant, including its high transmissibility and mutations. Experts comment on vaccines and boosters providing protection against severe illness from Omicron. The document also summarizes perspectives from healthcare leaders on challenges during the pandemic, such as staffing shortages, balancing telehealth and in-person care, and supporting staff well-being.
Childhood Tuberculosis and Community Healthcare_Anne Detjen_5.8.14CORE Group
This document discusses integrating tuberculosis (TB) screening and management into community-based primary care for children. It provides the following key points:
1) Children with TB often first present to primary care services, so engaging these services can help identify TB cases and contacts through simple screening questions.
2) Existing community case management frameworks for other diseases can be adapted to include basic TB interventions to increase suspicion of TB and identify at-risk children for referral.
3) Pilot testing is needed to evaluate how many TB suspects and cases in children can be identified by adding simple TB screening questions to integrated community case management algorithms.
1) The document discusses enhancing knowledge about Hepatitis-C among people who inject drugs (PWID) in Bangladesh, as PWID are highly vulnerable to Hepatitis-C infection.
2) According to a survey of 897 PWID in Bangladesh, only 26% had ever heard of Hepatitis-C, despite high rates of infection.
3) The conclusion recommends that HIV prevention programs in Bangladesh should provide more training and emphasis on Hepatitis-C for harm reduction outreach workers and PWID, to increase awareness and screening.
Strategies and Tactics to Leverage Social and Digital Media in Clinical Rese...Inspire
A pharmaceutical company partnered with Inspire, a social network for health, to better understand idiopathic pulmonary fibrosis (IPF) patients. Through surveys of IPF patients on Inspire, the company found that around 70% said their biggest issue was the "lack of therapies which make me feel better." When asked about clinical trial participation, 80% saw the comprehensive evaluation as a benefit, while around 20% saw the chance of a placebo as a drawback. The presentation argues that social networks provide a way for patients, particularly those with rare diseases, to be engaged, informed and have their voices heard by industry to accelerate research.
Poster slide show - PRIME Annual Meeting 2020angewatkins
The document summarizes the aims, activities, and plans of multiple research work packages within an organization over the past year and for the forthcoming year. Some of the key highlights mentioned include securing funding for trials and studies on topics like antibiotic prescribing and COVID-19, submitting applications for funding new research, and completing or making progress on ongoing research studies. The work packages plan to continue their research programs, pursue additional funding, and engage with partners to address healthcare needs over the coming year.
Jo Protheroe - Health Literacy and Health InequalityHLGUK
The document discusses health literacy and defines it as "the personal characteristics and social resources needed for individuals and communities to access, understand, appraise and use information and services to make decisions about health." It notes that resources and policy changes to improve health literacy must be meaningful, realistic, raise awareness, involve user testing, and develop and evaluate interventions. The document also announces an upcoming one-day conference on health literacy in Glasgow in March 2016 that will address health inequalities and welcomes applications for oral presentations and posters on related research, development, and practices.
This document discusses approaches to embedding health literacy in health and social care systems. It suggests deciding what aspects of health literacy to focus on, such as the life course or outreach programs. It also recommends ways to make health information and systems easier to use, such as redesigning materials to be jargon-free. Building health literacy capabilities through education and training is emphasized. Opportunities for improving health literacy during service contacts should also be taken. The impact of efforts should be measured using understandable and meaningful metrics.
Survillance and notification of communicable diseasemubeenButt5
Ongoing, systematic collection, analysis and interpretation of health data.
Surveillance and notification of communicable disease
1-Closely integrated with the timely dissemination to those who need to know.
Application of the data to preventing and controlling disease.
2-Authoritative or urgent, formal or legal notice.
The action of notifying someone or something.
Something that gives official information to someone : the act of notifying someone.
3-Monitor closely to all patients.
Collect patient’s data for clinical decision making.
Monitor different diagnostic tests and lab investigations if needed.
Implement interventions on patients and evaluate for the outcomes.
To conduct researches nurse can collect data.
To assess status of community and identify problems.
To detect changes in health care practices .
Administration of general and specific health survey.
Participation in early diagnosis and treatment
Identification and notification of certain specific diseases.
Health education.
5-Crude birth rate
Crude death rate
Infant mortality rate
Morbidity rate
Perinatal mortality rate
Maternal mortality rate
Life expectancy
General fertility rate
Patient Engagement in Health Economic and Outcomes Research: Current and Future ISPOR Initiatives, presentation from the ISPOR 20th International meeting Philadelphia, May 2015, by the Patient Centered Special Interest Group
This document discusses the importance for scientists to communicate their research to the public. It notes that the public may not understand aspects of scientific research like the fact that one study is not definitive or that health messages can change. Scientists also may not understand that the public wants to understand results and their relevance in everyday terms. The document provides tips for scientists in preparing research summaries, developing key messages, and conducting interviews with reporters to help raise awareness of their findings.
1) The global population is aging and chronic diseases are increasing, putting pressure on rising healthcare costs.
2) There is a shift toward more value-based and personalized healthcare that is consumer-focused, data-driven, and moves care to lower-cost settings including homes.
3) Connected technologies and services are transforming healthcare by improving access, outcomes and experience across the health continuum.
Riff: A Social Network and Collaborative Platform for Public Health Disease S...Taha Kass-Hout, MD, MS
A hybrid (event-based and indicator-based) platform designed to streamline the collaboration between domain experts and machine learning algorithms for detection, prediction and response to health-related events (such as disease outbreaks or pandemics). The platform helps synthesize health-related event indicators from a wide variety of information sources (structured and unstructured) into a consolidated picture for analysis, maintenance of “community-wide coherence”, and collaboration processes. The platform offers features to detect anomalies, visualize clusters of potential events, predict the rate and spread of a disease outbreak and provide decision makers with tools, methodologies and processes to investigate the event.
The center for disease control and prevention databaseericajohnson1993
The document discusses the Center for Disease Control and Prevention database. It explains that the CDC collects information through surveys, interviews, physical exams, and lab tests from sites in 10 states. This information helps people understand disease risks, prevalence, and prevention. The CDC updates its information every 5-6 years by conducting new surveys.
Ethics in Pandemics - Basic Principles and Advanced Planning.pptxMike Aref
The document discusses ethics considerations during pandemics and public health emergencies. It begins with a brief history of pandemics and infectious diseases. It then covers various bioethical frameworks and methods of analysis that can be applied to challenges that arise, including principlism, narrative ethics, and casuistry. The document also discusses the differences between clinical ethics and public health ethics. It uses several case examples to demonstrate how different bioethical approaches could be applied to issues like visitor restrictions, goals of care conversations, changing PPE recommendations, and resource allocation. Throughout, it emphasizes the importance of transparency, inclusion, reasonableness and revisiting decisions as more information becomes available.
This document discusses key concepts in medical ethics including:
1. The four basic principles of medical ethics are autonomy, beneficence, non-maleficience, and justice.
2. Informed consent and respect for patient autonomy are fundamental, such as allowing patients to refuse blood transfusions based on their beliefs.
3. The principle of non-maleficience means "first, do no harm" and requires medical competence to avoid intentionally harming patients.
This document discusses the potential for a global, goal-based initiative to improve women's health in low and middle income countries. It notes that women face many health risks throughout their lives from diseases like cancer, diabetes and childbirth complications. The "diagonal approach" is proposed to tackle multiple diseases and strengthen health systems by focusing on areas like prevention, reducing stigma, and improving access to care. Country examples show how integrating cancer services into health programs can expand coverage. Lessons highlight how advocacy combined with evidence can drive action, and how a global initiative could contribute to setting shared goals, measuring progress, and gaining knowledge to benefit all women. Challenges of funding, scope, and setting achievable yet meaningful interim goals are also discussed
This document outlines Dave deBronkart's journey from being diagnosed with cancer in 2007 to becoming a prominent advocate for patient engagement and empowerment. It discusses how he used online resources and connected with other patients online to research his condition, treatment options, and find doctors. This marked a transformation from a closed medical system to an open network where patients can access information and support from each other. The document argues that engaged, empowered patients will be an essential part of the healthcare system going forward to address the growing demographic of older patients. It suggests the concept of patient engagement is going through a paradigm shift as more recognize the importance of patient perspectives in care.
Biopsychosocial Model in Psychiatry- Revisited.pptxDevashish Konar
Over time our understanding of Psychiatric illnesses has undergone sea changes but yet the age old Bio-psycho-social model of etiology remains relevant. This presentation is an effort to explore the model in context of the newer developments.
This document outlines the author's argument that responding to the AIDS crisis is worth investing time and resources. It provides an overview of the problem, noting that HIV is a deadly disease with no vaccine or cure that has infected 34 million people globally. It then lists several challenges to resolving HIV, including genetic resistance, sexual transmission, lack of education and access to treatment, and stigma. The document proposes responses needed from governments, businesses, non-profits, citizens, and innovative solutions, such as increased funding for research, education, treatment, and initiatives to overcome stigma.
Social Media in Medical Education Presentation April 2016Azeem Majeed
Writing in medicine - How to Capture an audience: Editorials, letters, blogs and social media
Professor Azeem Majeed, Department of Primary Care and Public Health, Imperial College London
Social media differentiates itself from more traditional forms of media by its immediacy and its focus on social interaction. Websites and online forums allow users to share information through interactive electronic exchanges. Many businesses now incorporate social media into their marketing strategies to deliver key messages, advertise services or improve communication with clients. The NHS, doctors and health professionals have been slower to take up the use of social media but we are now also now seeing increased use of social media in the health sector. In this interactive workshop, I will discuss how health professionals can use social media to get their messages across to patients, and also the use of social media in education and campaigning. I will also discuss writing for traditional medical journals with a focus on publications such as editorials, commentaries, letters and clinical discussions.
Ethical issues in medicine and research:Special reference to IndiaJishnu Lalu
A detailed discussion on Ethical consideration concerning physician, patient, co-workers and research. It also discusses publication ethics and Ethics in India
This document discusses several ethical issues related to the COVID-19 pandemic. It begins with an overview of ethical decision-making models and frameworks. It then analyzes four clinical ethics cases related to visitor restrictions, goals of care conversations, code status for COVID-19 patients, and mandating the COVID-19 vaccine. For each case, it applies the "four boxes" method of casuistry to analyze the medical indications, patient preferences, quality of life considerations, and contextual features. It concludes with a discussion of resource allocation challenges when demand exceeds supply, such as shortages of staff, drugs, medical equipment and disparities in healthcare access and outcomes.
Better Knowledge. Better Health? Making Research Relevant, Accessible, and P...Marie Ennis-O'Connor
This document discusses making research more relevant, accessible, and prioritized to patient needs through systematic reviews and knowledge translation. It emphasizes:
1) Involving patients throughout the research process to ensure the questions asked and outcomes measured are truly important to patients.
2) Ensuring research findings are disseminated through various channels in a timely, accessible, and understandable manner so they can inform healthcare decisions.
3) The importance of validity, relevance, and translating research into practical applications to benefit patients.
Patient Focus within Healthcare CongressesPYA, P.C.
As the doctor-patient relationship evolves, the terms “patient activation and engagement” are cropping up more frequently in healthcare circles, including the International Pharmaceutical Congress Advisory Association (IPCAA) Conference in Philadelphia. PYA Principal Kent Bottles, MD, who is also chief medical officer of PYA Analytics, presented “Patient Focus within Healthcare Congresses.”
Data science sig june 23, 2017 introduction, comments and feedbackData Science NIH
This document provides an overview of a webinar titled "Global Perspective on Biobanking and Access to Samples" that took place on June 23, 2017. The webinar featured presentations from experts in biobanking from the United States, Netherlands, Spain, Australia, and other countries. They discussed topics such as finding and accessing biospecimen data internationally, rare disease samples, academic biorepository operations, and improving biospecimen consent processes. Attendees provided positive feedback and questions on incentivizing sharing of rare disease samples and data, locating rare disease specimens, and collaborating with patient groups.
This document provides an overview of a webinar titled "Global Perspective on Biobanking and Access to Samples" that took place on June 23, 2017. The webinar featured presentations from experts in biobanking from the United States, Netherlands, Spain, Australia, and other countries. They discussed topics such as finding and accessing rare disease samples, academic biorepository operations, sample locators, and issues specific to rare disease biobanks. Attendees provided positive feedback and questions on incentivizing sample sharing, improving consent processes, and collaborating to increase sample donations.
Antimicrobial resistance is one of the biggest threats to human health and is rising to dangerously high levels in all parts of the world. Anyone, of any age, in any country, could be impacted. While it's normal for microbes to develop resistance to drugs, the way antimicrobials are currently being used is accelerating the process, and as a result common infections and minor injuries are becoming an increasingly greater threat to our well-being. Organizations from across the world are taking action and making progress on this issue, but is there anything patients, their families and patient advisors can do to help?
See the full presentation here: https://goo.gl/AYCsdd
Crotty engaging patients in new ways from open notes to social mediaTrimed Media Group
The document discusses new ways to engage patients through open notes and social media. It describes initial findings from the OpenNotes project that showed patients found value in reading clinical notes. It also outlines how patients use social media to find health information and connect with others. The document argues that healthcare providers can leverage these technologies and concepts to reduce information asymmetry, educate patients, and learn from them to provide more engaging and effective care.
This document summarizes a presentation on using social media tools and metrics to raise awareness of clinical trials and recruit participants. It discusses engaging audiences on social platforms by using interesting, relevant, and motivating messages. The presentation also describes focus groups that identified effective messaging around clinical trials, including normalizing them, emphasizing options and hope, and presenting action steps. Additionally, it summarizes a case study partnering with organizations to increase African Americans' awareness of and participation in a multiple myeloma clinical trial through targeted social media outreach.
How can front-line professionals incorporate the emerging brain health ...SharpBrains
(Session held at the 2014 SharpBrains Virtual Summit; October 28-30th, 2014)
12:30-2pm. How can front-line professionals incorporate the emerging brain health toolkit to their practices?
- Elizabeth Frates, Director of Medical Student Education at the Institute of Lifestyle Medicine
- Dr. Catherine Madison, Director of the Ray Dolby Brain Health Center at California Pacific Medical Center
- Barbara Van Amburg, Chief Nursing Officer at Kaiser Permanente Redwood City
- Dr. Wendy Law, Clinical Neuropsychologist at Walter Reed National Military Medical Center
- Chair: Dr. Michael O’Donnell, Editor-In-Chief of the American Journal of Health Promotion
Learn more here:
http://sharpbrains.com/summit-2014/agenda/
2010 11 13 european cme forum jan geissler 1.5jangeissler
This document discusses how patient advocacy groups can strengthen medical education and best practices. It notes that patient groups can provide complementary perspectives to medical professionals by sharing their experiences living with diseases. They can help improve patient-doctor communication and identify unmet patient needs. The document advocates for greater involvement of patient voices at scientific conferences and in educating doctors and nurses, to provide more holistic and patient-centric care.
Evaluating medical evidence for journalistsIvan Oransky
This document provides tips for journalists on evaluating medical evidence from studies. It discusses issues like the reliability of peer review and publication bias. It also covers challenges like overreliance on embargoed studies, how often studies are later found to be wrong, and the rise in retractions. The document provides advice on getting studies, assessing study quality, considering benefits and harms, and maintaining objectivity. It emphasizes the importance of reading full studies rather than just press releases or abstracts. Overall, the document aims to help journalists critically evaluate medical studies and provide accurate reporting to readers.
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More information about the virtual event is available here: http://ow.ly/YntW50GWhJ0
Sex, Drugs & Scotland's Health- How do Older People talk about their Sexuality HIVScotland
This document discusses a review of qualitative research studies on how older people discuss their own sexuality. The review focused on studies that examined the subjective experiences of older individuals aged 60 and older regarding their attitudes, perceptions, and experiences with sexuality. The review found that older individuals often feel their sexuality is not socially legitimate and feel they are presumed asexual. They also experience social silence around sexuality, internalized inhibitions, and feel they must conceal their sexuality. While health has a major impact on sexuality in older age, many still report high sexual desire. The review concludes that wider social influences shape sexuality in older life, but more open conversations are needed to address diversity and support healthy sexuality as a human right at all ages.
Sex, Drugs & Scotland's Health- Cocaine on the brainHIVScotland
Delivered at Sex, Drugs & Scotland's Health Virtual Conference, this presentation was delivered by Lee Kruszyna.
More information about the virtual event is available here: http://ow.ly/YntW50GWhJ0
Sex, Drugs & Scotland's Health- The prevalence and impacts of stealthing (non...HIVScotland
Delivered at Sex, Drugs & Scotland's Health Virtual Conference, this presentation was delivered by Niamh Roberts & Kate Astbury.
More information about the virtual event is available here: http://ow.ly/YntW50GWhJ0
Sex, Drugs & Scotland's Health- Population- level estimates of Hepatitis C re...HIVScotland
Delivered at Sex, Drugs & Scotland's Health Virtual Conference, this presentation was delivered by Dr Alan Yeung.
More information about the virtual event is available here: http://ow.ly/YntW50GWhJ0
Sex, Drugs & Scotland's Health- Feeling rules in youth break up cultures: Imp...HIVScotland
Delivered at Sex, Drugs & Scotland's Health Virtual Conference, this presentation was delivered by Raquel Boso Perez.
More information about the virtual event is available here: http://ow.ly/YntW50GWhJ0
Sex, Drugs & Scotland's Health- Experience of aging with HIV in residential c...HIVScotland
Delivered at Sex, Drugs & Scotland's Health Virtual Conference, this presentation was delivered by Eseoghene Johnson.
More information about the virtual event is available here: http://ow.ly/YntW50GWhJ0
Sex, Drugs & Scotland's Health- Post-AIDS Health Promotion: Theories and MethodsHIVScotland
This document outlines Chase Ledin's research on post-AIDS health promotion theories and methods. The research aims to examine how strategies to end AIDS have been integrated or contested in the UK and Scottish contexts. It also examines how critical conversations about ending HIV can contribute to HIV literacy and how post-AIDS perspectives could help develop adapted intervention strategies. Key theories discussed include approaching the end of AIDS as a problem rather than a solution, and counterpublic health that contends with challenges of HIV infection and medicalization of pleasure and health. Key resources for ending HIV campaigns run by organizations are also mentioned.
Sex, Drugs & Scotland's Health- Positive and negative feelings among people l...HIVScotland
Delivered at Sex, Drugs & Scotland's Health Virtual Conference, this presentation was delivered by Alastair Hudson.
More information about the virtual event is available here: http://ow.ly/YntW50GWhJ0
Sex, Drugs & Scotland's Health- Healthcare use among people living with HIV i...HIVScotland
Delivered at Sex, Drugs & Scotland's Health Virtual Conference, this presentation was delivered by Alastair Hudson.
More information about the virtual event is available here: http://ow.ly/YntW50GWhJ0
The document summarizes the proceedings of the Positive Persons' Forum held in Glasgow on February 13, 2016. It includes:
- An overview and welcome from the chair Wullie Irvine.
- A presentation from George Valiotis on changes since the last forum.
- Presentations from various speakers on topics like education, peer support, involvement workshops, and cure research.
- Information on Project 100, a peer support initiative, and the changing role of peer support.
- Details of the 2015 People Living with HIV Stigma Index survey that involved over 1,500 people living with HIV across the UK.
Clinician's perspective on PrEP - Dr Dan ClutterbuckHIVScotland
This presentation was given by Dr Dan Clutterbuck of NHS Lothian and NHS Borders, at the HIV Scotland 'PrEP Roundtable Discussion' event on 25 August 2015.
1) There are an estimated 6,450 people living with HIV in Scotland, with 4900 diagnosed and 1550 undiagnosed. HIV transmission continues to occur, and late diagnosis remains a problem.
2) The majority of those diagnosed access specialist care and treatment, with over 80% in care and over 85% receiving treatment. However, ongoing efforts are needed to address late diagnosis and optimize treatment outcomes.
3) While new pediatric HIV infections are rare in Scotland, consisting mainly of imported cases, ongoing monitoring is needed as those infected may have lived with HIV for decades and the cohort is aging.
HIV and the general internal medical curriculum - by Rob LaingHIVScotland
Presentation by Rob Laing, on HIV and the general internal medical curriculum. This was presented at the Scottish HIV and AIDS Group annual meeting on 26 June 2015. Copyright Rob Laing.
Preliminary findings _OECD field visits to ten regions in the TSI EU mining r...OECDregions
Preliminary findings from OECD field visits for the project: Enhancing EU Mining Regional Ecosystems to Support the Green Transition and Secure Mineral Raw Materials Supply.
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2. Context
• 34 million people living with HIV
• Inevitably fatal before 1996
• Advent of ART – Great improvements but
Toxicities
• Stigma
• Normal life expectancy
3. Perspectives
‘To be cured?
Honestly, why would I want that?
I’ve lived with HIV almost half of my life.
All of my peer group died but I survived and, through HIV,
made many wonderful, new friends.
HIV has made me the person I am today and has given
me the most interesting life.’
Tom Matthews, Vice Chair AB Plus, Birmingham, UK, aged
65.
4. Patient Advocacy Perspectives on Cure
Research
‘A cure exists and is being withheld.’
‘What interest do pharmaceutical companies have in developing a cure when they
make so much money from HIV medicines?’
• Cure research is complex, myriad of small studies
• The term itself has multiple definitions which confuses PLWHA
• High motivation to take part in trials-
– altruism,
– direct/in-direct health benefits,
– financial reward,
– to be in line to access something better
• A cure may not preclude an individual from reinfection
• Why put limited resources into cure research when HIV treatment scale up has
further to go?
• There may be a different perspective among adolescents who acquired HIV
perinataly?
6. How do patients hear about cure
research?
• General Media: A reliable and scale-able HIV cure is likely years and
not months away. It plays with people’s hopes and expectations in
very negative ways to misstate the truth in order to get a good
headline and generate debate in social media
• Better sources would be:
• www.hivforum.org
• www.projectinform.org (Check out their staff pets page)
• www.treatmentactiongroup.org (Great listing of current clinical
trials, completed studies, observational studies, and completed
studies)
• Community media should now begin to play a role in raising
awareness among affected communities about cure research
• There is a great need for community education and training to raise
cure strategy literacy
7. What are patients’ expectations on
cure research?
• The context is one of optimism and disappointment:
– The long-term diagnosed remember predictions that fully
suppressive ART would cure people in 8-10 years
– Better to be a patient in Berlin than Boston but rather France (if
you start treatment very early)
– Babies are special
• A long road ahead; realisable in my lifetime?
• Will it be affordable, scalable?
• Will there be access for all?
• None of the interventions currently under study are
expected to cure people of HIV
• Current studies are gathering info for future developments
8. What information do patients want
from their physicians?
• The meaningful stuff- whatever that is…
• Help to understand complex concepts, terms and
current strategies in clinical trial
• Reassurance to keep taking ART while studies are
underway
• Help to ensure proper informed consent takes
place if an individual joins a clinical trial
• Access to clinical trials
• Guidance to useful patient-friendly resources
9. Why might it be impossible?
Latently infected cells- cells that are infected
but then have gone to sleep- possibly for
lifespan of person living with HIV
Reservoir
What might a cure look like?
Is it achievable?
What role for early treatment?
10. What is a cure?
2 ways of thinking of cure
‘sterilising cure’- get rid of
infection from body – The Berlin
Patient
Functional cure- cancer model –
but patient can control it- no
disease progression.
11. Current work at Imperial College
London
• Novel intervention studies
• Several different cohorts and trials- people who
need chemotherapy are being followed
• What differentiates those who are likely to cure
from those who are not?
• Funded to look at developing vaccines to get the
immune system
• HDAC inhibitor plus vaccine in addition to ARV
therapy
13. Conclusions
• Believe we will see a cure in our lifetimes
• Hundreds of studies underway
• These are unlikely to provide cure but will
provide insights
• Would you take part in a trial?
• Would you give up HIV meds during a study?
• A cure wont protect from reinfection