Measuring willingness to pay in patients with alopecia areata to gauge their willingness to pay out of pocket for a cure or control of their condition.
This study analyzed insurance claims data from before and after the implementation of the Federal Mental Health Parity and Addiction Equity Act to examine the effects of parity on substance use disorder treatment. The results showed:
1) There was no change in the use of substance use disorder services or the total annual spending per enrollee on these services (which increased by only $10 per enrollee).
2) There was also no change in out-of-pocket spending for substance use disorder treatment users or several HEDIS quality measures related to identification and initiation of treatment.
3) This suggests that concerns about parity greatly increasing health care costs related to substance use disorder treatment were unfounded.
This study compared retention rates, satisfaction, and safety between intimate partner violence (IPV) research participants paid via wireless gift cards versus cash. Participants receiving gift cards completed significantly more of the 12 weekly phone surveys (average 8.3 vs 6 calls). Over 90% of gift card recipients expressed satisfaction, and 60% preferred this method. While safety did not differ, wireless incentives may improve retention in repetitive IPV research that can involve remote data collection.
Stephen Toft - Programme Officer Palliative Care, HSE Primary Care Division, specialist palliative care minimum data set acute hospital figures 2016 and 2017 per hospital.
This document discusses non-adherence to medication. It begins by defining non-adherence and reviewing studies showing patients only adhere to their medications 35-50% of the time. There are two types of non-adherence: passive (barriers outside patient control) and active (intentional non-adherence). Non-adherence increases morbidity, mortality, and costs the healthcare system. Studies show inconsistent gender differences in adherence, with most showing lower adherence in women, and the highest non-adherence rate in adults aged 65-75. The document proposes targeting female patients aged 65-75 in the UK prescribed antihypertensive medication, using a remote intervention informed by the Health Belief Model.
This document discusses several quality issues at Ryhov Hospital in Jönköping, Sweden including medical errors, data breaches, healthcare-associated infections, and issues related to heart failure care. It notes that medical errors can be attributed to factors like high patient volumes, inadequate nurse-patient ratios, increased workload, and decreased resources. The document also references several studies on topics like patient involvement in care, the effects of heart failure on quality of life, and the need for improved patient and nurse education about heart failure self-management.
Most older adults surveyed (96%) were willing to have a proxy make decisions for them regarding participation in research studies, even if the research did not provide a direct benefit. Those with more favorable attitudes towards research were most likely to support proxy consent. While minority status was initially associated with less willingness, this effect disappeared when accounting for attitudes towards research. The findings suggest policies should allow proxies flexibility in decision making rather than strictly adhering to a subject's past preferences.
This document summarizes research on risk assessment of patients presenting to the emergency department (ED) with acute heart failure (AHF). Nearly 700,000 ED visits each year are due to AHF, with over 80% resulting in hospital admission. Existing risk prediction tools for AHF have not impacted admission rates. The authors hypothesize that evaluating both physiological risk factors and barriers to self-care, along with strategies to overcome barriers and shared decision making between providers and patients, could allow more patients to be safely discharged from the ED or observation units rather than admitted. This approach may help reduce hospital admissions, readmissions, and costs while improving long-term management of heart failure.
The document discusses barriers and facilitators to policymakers using research evidence in decision making. It finds that the primary facilitator is personal contact between researchers and policymakers, while the main barrier is the lack of such contact. It also lists other factors that can encourage or discourage the use of evidence in policy, and strategies for bridging the gap between researchers and policymakers such as jointly setting agendas and facilitating interaction.
This study analyzed insurance claims data from before and after the implementation of the Federal Mental Health Parity and Addiction Equity Act to examine the effects of parity on substance use disorder treatment. The results showed:
1) There was no change in the use of substance use disorder services or the total annual spending per enrollee on these services (which increased by only $10 per enrollee).
2) There was also no change in out-of-pocket spending for substance use disorder treatment users or several HEDIS quality measures related to identification and initiation of treatment.
3) This suggests that concerns about parity greatly increasing health care costs related to substance use disorder treatment were unfounded.
This study compared retention rates, satisfaction, and safety between intimate partner violence (IPV) research participants paid via wireless gift cards versus cash. Participants receiving gift cards completed significantly more of the 12 weekly phone surveys (average 8.3 vs 6 calls). Over 90% of gift card recipients expressed satisfaction, and 60% preferred this method. While safety did not differ, wireless incentives may improve retention in repetitive IPV research that can involve remote data collection.
Stephen Toft - Programme Officer Palliative Care, HSE Primary Care Division, specialist palliative care minimum data set acute hospital figures 2016 and 2017 per hospital.
This document discusses non-adherence to medication. It begins by defining non-adherence and reviewing studies showing patients only adhere to their medications 35-50% of the time. There are two types of non-adherence: passive (barriers outside patient control) and active (intentional non-adherence). Non-adherence increases morbidity, mortality, and costs the healthcare system. Studies show inconsistent gender differences in adherence, with most showing lower adherence in women, and the highest non-adherence rate in adults aged 65-75. The document proposes targeting female patients aged 65-75 in the UK prescribed antihypertensive medication, using a remote intervention informed by the Health Belief Model.
This document discusses several quality issues at Ryhov Hospital in Jönköping, Sweden including medical errors, data breaches, healthcare-associated infections, and issues related to heart failure care. It notes that medical errors can be attributed to factors like high patient volumes, inadequate nurse-patient ratios, increased workload, and decreased resources. The document also references several studies on topics like patient involvement in care, the effects of heart failure on quality of life, and the need for improved patient and nurse education about heart failure self-management.
Most older adults surveyed (96%) were willing to have a proxy make decisions for them regarding participation in research studies, even if the research did not provide a direct benefit. Those with more favorable attitudes towards research were most likely to support proxy consent. While minority status was initially associated with less willingness, this effect disappeared when accounting for attitudes towards research. The findings suggest policies should allow proxies flexibility in decision making rather than strictly adhering to a subject's past preferences.
This document summarizes research on risk assessment of patients presenting to the emergency department (ED) with acute heart failure (AHF). Nearly 700,000 ED visits each year are due to AHF, with over 80% resulting in hospital admission. Existing risk prediction tools for AHF have not impacted admission rates. The authors hypothesize that evaluating both physiological risk factors and barriers to self-care, along with strategies to overcome barriers and shared decision making between providers and patients, could allow more patients to be safely discharged from the ED or observation units rather than admitted. This approach may help reduce hospital admissions, readmissions, and costs while improving long-term management of heart failure.
The document discusses barriers and facilitators to policymakers using research evidence in decision making. It finds that the primary facilitator is personal contact between researchers and policymakers, while the main barrier is the lack of such contact. It also lists other factors that can encourage or discourage the use of evidence in policy, and strategies for bridging the gap between researchers and policymakers such as jointly setting agendas and facilitating interaction.
- A survey was conducted of internal medicine and family medicine residents at UCSD to examine their willingness to prescribe sildenafil (Viagra) in different ethically challenging scenarios.
- The survey presented 10 scenarios that varied factors like HIV status, sexual orientation, safe sex practices, and relationship status.
- The results showed residents were less likely to prescribe sildenafil to those with risky behavior, HIV-positive patients, and those in adulterous relationships, indicating extra-therapeutic factors influenced their decisions.
- The study concluded residency programs should help residents balance respecting patient autonomy with protecting society and addressing biases and moral views that could impact patient care.
Integrative Health + Data - National Data Institute - FinalRuthann Russo
This document discusses the intersection of chronic condition documentation and coding with data-driven reimbursement, patient satisfaction, and cost. It proposes an integrative population health approach using evidence-based integrative health practices to improve chronic illness management, health promotion, self-care, and patient engagement. Data analytics can
The document provides an overview of U.S. healthcare spending. It shows that in 2018, 31% of the $1.4 trillion in annual healthcare costs went to hospitals. The top 1% of patients accounted for $270 billion in costs, with an average of $86,000 per patient, while the bottom 50% accounted for $35 billion, with an average of $4,000 per patient. Government programs like Medicare and Medicaid paid for about two-thirds of hospital spending.
Rajeshwari Punekar is a researcher studying various health-related topics including work disability rates in cancer survivors compared to other chronic conditions, factors associated with community health centers providing enabling services, trends in employment-based health insurance, medical expenditures of cancer survivors, and mental health of cancer survivors and their spouses. Her roles include being a research assistant, co-investigator, and assistant data analyst. She uses large datasets and statistical methods like regression analysis to analyze topics and has worked on multiple research projects.
1) The study examines how individual and neighborhood level poverty impact medication adherence among individuals with high cholesterol in New York City. It uses data from the 2014 New York City Community Health Survey.
2) Preliminary results show that individuals with incomes below 200% of the federal poverty level and those living in high poverty neighborhoods are less likely to adhere to cholesterol medications.
3) Additional factors associated with non-adherence include being uninsured, using the emergency department as a usual source of care, depression, younger age, and being black. The study aims to further explore these relationships through statistical analysis.
* Raysa Morales-Demori, MD
Type of study: Retrospective cohort study
Database: Pediatric Health Information System
Study period: 01/2004 – 12/2017
Inclusion criteria:
All patients ≤ 21 year
Heart failure diagnoses ICD-9 (428.xx) or ICD-10 (i50.xx)
Digoxin use was associated with decreased inpatient mortality
In patients with CHD (24% vs 76%, p<0.001)
In Extreme Risk of Mortality (17% vs 83%, p<0.001)
1) A death audit was conducted for patients who passed away in January and February 2015. Of the 8 patients, 4 were men and 4 were women, with an average age of 57.5 years.
2) Heart disease was common among the deceased. 75% had heart failure, 87% had myocardial infarction, and 75% had cardiovascular risk factors like hypertension and smoking.
3) Learning issues identified included high rates of comorbidities, complications from treatment, and challenges with early diagnosis and coordinated patient education. Areas like sepsis management, revascularization, and cardiogenic shock outcomes need further improvement.
This study assessed blood donation patterns and motivators in Acholi sub-region of Uganda. The results showed that only 41.8% of the required blood was being collected, with fluctuations corresponding to school holidays. There was no significant trend in quantities donated over four years. Nearly half of blood was discarded due to hepatitis B and C. Motivators for donation included health status screening and altruism, while lack of time and fears were demotivating factors. The researchers recommend strategies to retain donors and explore alternatives to voluntary donation to improve collection rates.
Risk management in healthcare involves assessing potential risks in administration, operations, patient care, and safety. It requires evaluating risks to service providers like medication errors, surgical errors, and quality of care issues. Risks are assessed based on their consequences and likelihood of occurring, with the goal of developing policies and procedures to reduce risks. Strategies include following up on abnormal test results, reducing dosing errors, and disclosing medical errors to patients.
The document reports the results of a national survey of 569 intensivist physicians regarding their attitudes toward regionalization of adult critical care. 59% saw their role as mainly receiving patients, while 30% saw it as mainly sending patients. Most physicians felt regionalization would improve survival rates, but many had concerns about unintended consequences. Key barriers to implementation identified included the need for strong central authority, strain on families, overwhelming capacity at large hospitals, and financial strain. Potential solutions included common IT platforms, clinical trials demonstrating benefits, and objective transfer criteria.
This document summarizes research on scaling up antiretroviral therapy (ART) in resource-limited countries. It discusses using cost-effectiveness analysis to evaluate the value of ART programs in Côte d'Ivoire, India, and South Africa. The research finds that providing both first-line and second-line ART is cost-effective in these countries. It also finds that earlier initiation of ART in South Africa increases survival and is cost-effective. Faster scale-up of ART programs can significantly reduce AIDS-related deaths.
1) Geriatric assessment is important for elderly cancer patients to evaluate multiple health domains beyond just cancer and avoid under or overtreatment.
2) Assessments can identify issues like frailty, nutrition, mood, functionality that require management to optimize outcomes and quality of life during cancer treatment.
3) A multidisciplinary approach including nutrition support, exercise interventions, and comprehensive management of geriatric conditions can improve survival and reduce complications in elderly cancer patients.
This document discusses administrative issues in emergency departments. It provides statistics on the growth and importance of emergency medicine as a specialty and the role of emergency departments in hospitals. It notes that emergency departments see a high volume of patients, often with high acuity, and generate a significant portion of hospital activity, funding, and physician full-time equivalents. The document also discusses perceptions of risk in emergency medicine and examines exam pass rates and allegations of institutional racism regarding emergency medicine certification exams.
1. The document discusses moving healthcare competition away from lowering costs and towards increasing patient value. It proposes focusing on medical conditions over full care cycles and competing based on quality outcomes.
2. Key principles for value-based competition include defining value as health outcomes rather than just costs; basing competition on standardized outcome measures; focusing competition at the medical condition level; and that high quality care can be less expensive in the long run.
3. Experience, scale, and learning at the medical condition level drive value. Competition should also be regional or national rather than just local to allow for growth in condition-specific expertise. Public reporting of standardized outcome and cost data is necessary to enable value-based competition.
Patient perspective on TKI treatment and monitoring in CMLspa718
This document summarizes the results of a study examining chronic myeloid leukemia (CML) treatment and monitoring patterns from the perspective of patients in China. The study found that over 70% of respondents began tyrosine kinase inhibitor (TKI) treatment within one year of diagnosis, with imatinib being the most commonly used TKI. Most respondents achieved an optimal response but over 60% cited high financial burden as the main obstacle to treatment. While many received regular monitoring, over 30% did not undergo regular molecular testing. The study concludes that expanding insurance coverage, lowering drug costs, and promoting standard monitoring could help improve outcomes for CML patients in China.
The Value of Targeted Sequencing in Advanced Cancer: DCE to Elicit the Public...Office of Health Economics
This project seeks to elicit the public’s preferences for different features of a genomic test to sequence advanced solid cancer tumours. Understanding the relative preferences for various attributes of targeted testing are useful for determining the value of sequencing approaches, and informing technology adoption decisions. A discrete choice experiment (DCE) survey was designed to assess the preferences of members of the Australian general public for targeted sequencing in advanced cancer. The survey presented respondents with 12 questions in which they had to choose between two unlabelled tests (Test A and Test B). Tests were specified in terms of five attributes: time to receive the test result; cost of the test; likelihood that the test result will lead to a change in treatment; length of time health care professionals spend describing the test; and type of health care team who explains the test result. Respondents were sampled from an online panel and also completed questions related to demographic and socio-economic factors, experiences of cancer and familial history. We found that cost, timeliness, expertise/location and likeliness of changing treatment regimes were identified as attributes of genomic sequencing that are most valuable to a sample of the public. These results will ultimately be compared with the results of an ongoing DCE being conducted with patients with advanced cancer who are undergoing sequencing.
Author(s) and affiliation(s): Paula Lorgelly (OHE), Grace Hampson (OHE), James Buchanan (Oxford), Melissa Martyn (MGHA), Jayesh Desai (PeterMac), Clara Gaff (MGHA), and iPREDICT MGHA Flagship collaborators
Conference/meeting: EuHEA 2018
Location: Maastricht, the Netherlands
Date: 12/07/2018
The goal of this webinar was to help healthcare professionals improve care coordination for patients with advanced illness and to reduce hospital readmissions and length of stay.
The document discusses various ways that nonprofit organizations partner with patients and the medical research community to advance research and drug development. It provides examples of how organizations fund research, develop tools and resources, facilitate clinical trials, advocate for policy changes, and build communities to accelerate the development of new treatments. Specific organizations highlighted include the Alzheimer's Drug Discovery Foundation, Juvenile Diabetes Research Foundation, Multiple Myeloma Research Foundation, ALS Therapy Development Institute, and Genetic Alliance.
The document discusses various ways that nonprofit organizations partner with patients and the medical research community to advance research and drug development. It provides examples of how organizations fund research, develop tools and resources, facilitate clinical trials, advocate for policy changes, and build communities to accelerate the development of new treatments. Specific organizations highlighted include the Alzheimer's Drug Discovery Foundation, Juvenile Diabetes Research Foundation, Multiple Myeloma Research Foundation, ALS Therapy Development Institute, and Genetic Alliance.
This document summarizes a presentation given by Adrian Towse on dimensions of value assessment and decision making. It discusses identifying elements of value, which usually include health effects and cost offsets but less frequently include other factors like patient preferences. Methods of assessing value discussed include using QALYs and categories/scales. The presentation also covers translating assessments of value to price and affordability, noting two main approaches of cost-effectiveness requirements and therapeutic added value requirements. It provides examples of using categories/scales to support different pricing approaches from various countries and organizations.
Technology Assessment, Outcomes Research and Economic Analysesevadew1
This document discusses technology assessment, outcomes research, and economic analyses in healthcare. It provides background on rising healthcare costs in the US and outlines a hierarchy for assessing new medical technologies from technical efficacy to patient and societal outcomes. Randomized controlled trials are described as the gold standard but limitations are noted. Alternative study designs like modeling and assessing intermediate outcomes are proposed when RCTs are not feasible. The document uses CT for appendicitis as an example to work through initial steps in outcomes research. It also discusses limitations and alternative outcomes like assessing the therapeutic value of diagnostic tests.
- A survey was conducted of internal medicine and family medicine residents at UCSD to examine their willingness to prescribe sildenafil (Viagra) in different ethically challenging scenarios.
- The survey presented 10 scenarios that varied factors like HIV status, sexual orientation, safe sex practices, and relationship status.
- The results showed residents were less likely to prescribe sildenafil to those with risky behavior, HIV-positive patients, and those in adulterous relationships, indicating extra-therapeutic factors influenced their decisions.
- The study concluded residency programs should help residents balance respecting patient autonomy with protecting society and addressing biases and moral views that could impact patient care.
Integrative Health + Data - National Data Institute - FinalRuthann Russo
This document discusses the intersection of chronic condition documentation and coding with data-driven reimbursement, patient satisfaction, and cost. It proposes an integrative population health approach using evidence-based integrative health practices to improve chronic illness management, health promotion, self-care, and patient engagement. Data analytics can
The document provides an overview of U.S. healthcare spending. It shows that in 2018, 31% of the $1.4 trillion in annual healthcare costs went to hospitals. The top 1% of patients accounted for $270 billion in costs, with an average of $86,000 per patient, while the bottom 50% accounted for $35 billion, with an average of $4,000 per patient. Government programs like Medicare and Medicaid paid for about two-thirds of hospital spending.
Rajeshwari Punekar is a researcher studying various health-related topics including work disability rates in cancer survivors compared to other chronic conditions, factors associated with community health centers providing enabling services, trends in employment-based health insurance, medical expenditures of cancer survivors, and mental health of cancer survivors and their spouses. Her roles include being a research assistant, co-investigator, and assistant data analyst. She uses large datasets and statistical methods like regression analysis to analyze topics and has worked on multiple research projects.
1) The study examines how individual and neighborhood level poverty impact medication adherence among individuals with high cholesterol in New York City. It uses data from the 2014 New York City Community Health Survey.
2) Preliminary results show that individuals with incomes below 200% of the federal poverty level and those living in high poverty neighborhoods are less likely to adhere to cholesterol medications.
3) Additional factors associated with non-adherence include being uninsured, using the emergency department as a usual source of care, depression, younger age, and being black. The study aims to further explore these relationships through statistical analysis.
* Raysa Morales-Demori, MD
Type of study: Retrospective cohort study
Database: Pediatric Health Information System
Study period: 01/2004 – 12/2017
Inclusion criteria:
All patients ≤ 21 year
Heart failure diagnoses ICD-9 (428.xx) or ICD-10 (i50.xx)
Digoxin use was associated with decreased inpatient mortality
In patients with CHD (24% vs 76%, p<0.001)
In Extreme Risk of Mortality (17% vs 83%, p<0.001)
1) A death audit was conducted for patients who passed away in January and February 2015. Of the 8 patients, 4 were men and 4 were women, with an average age of 57.5 years.
2) Heart disease was common among the deceased. 75% had heart failure, 87% had myocardial infarction, and 75% had cardiovascular risk factors like hypertension and smoking.
3) Learning issues identified included high rates of comorbidities, complications from treatment, and challenges with early diagnosis and coordinated patient education. Areas like sepsis management, revascularization, and cardiogenic shock outcomes need further improvement.
This study assessed blood donation patterns and motivators in Acholi sub-region of Uganda. The results showed that only 41.8% of the required blood was being collected, with fluctuations corresponding to school holidays. There was no significant trend in quantities donated over four years. Nearly half of blood was discarded due to hepatitis B and C. Motivators for donation included health status screening and altruism, while lack of time and fears were demotivating factors. The researchers recommend strategies to retain donors and explore alternatives to voluntary donation to improve collection rates.
Risk management in healthcare involves assessing potential risks in administration, operations, patient care, and safety. It requires evaluating risks to service providers like medication errors, surgical errors, and quality of care issues. Risks are assessed based on their consequences and likelihood of occurring, with the goal of developing policies and procedures to reduce risks. Strategies include following up on abnormal test results, reducing dosing errors, and disclosing medical errors to patients.
The document reports the results of a national survey of 569 intensivist physicians regarding their attitudes toward regionalization of adult critical care. 59% saw their role as mainly receiving patients, while 30% saw it as mainly sending patients. Most physicians felt regionalization would improve survival rates, but many had concerns about unintended consequences. Key barriers to implementation identified included the need for strong central authority, strain on families, overwhelming capacity at large hospitals, and financial strain. Potential solutions included common IT platforms, clinical trials demonstrating benefits, and objective transfer criteria.
This document summarizes research on scaling up antiretroviral therapy (ART) in resource-limited countries. It discusses using cost-effectiveness analysis to evaluate the value of ART programs in Côte d'Ivoire, India, and South Africa. The research finds that providing both first-line and second-line ART is cost-effective in these countries. It also finds that earlier initiation of ART in South Africa increases survival and is cost-effective. Faster scale-up of ART programs can significantly reduce AIDS-related deaths.
1) Geriatric assessment is important for elderly cancer patients to evaluate multiple health domains beyond just cancer and avoid under or overtreatment.
2) Assessments can identify issues like frailty, nutrition, mood, functionality that require management to optimize outcomes and quality of life during cancer treatment.
3) A multidisciplinary approach including nutrition support, exercise interventions, and comprehensive management of geriatric conditions can improve survival and reduce complications in elderly cancer patients.
This document discusses administrative issues in emergency departments. It provides statistics on the growth and importance of emergency medicine as a specialty and the role of emergency departments in hospitals. It notes that emergency departments see a high volume of patients, often with high acuity, and generate a significant portion of hospital activity, funding, and physician full-time equivalents. The document also discusses perceptions of risk in emergency medicine and examines exam pass rates and allegations of institutional racism regarding emergency medicine certification exams.
1. The document discusses moving healthcare competition away from lowering costs and towards increasing patient value. It proposes focusing on medical conditions over full care cycles and competing based on quality outcomes.
2. Key principles for value-based competition include defining value as health outcomes rather than just costs; basing competition on standardized outcome measures; focusing competition at the medical condition level; and that high quality care can be less expensive in the long run.
3. Experience, scale, and learning at the medical condition level drive value. Competition should also be regional or national rather than just local to allow for growth in condition-specific expertise. Public reporting of standardized outcome and cost data is necessary to enable value-based competition.
Patient perspective on TKI treatment and monitoring in CMLspa718
This document summarizes the results of a study examining chronic myeloid leukemia (CML) treatment and monitoring patterns from the perspective of patients in China. The study found that over 70% of respondents began tyrosine kinase inhibitor (TKI) treatment within one year of diagnosis, with imatinib being the most commonly used TKI. Most respondents achieved an optimal response but over 60% cited high financial burden as the main obstacle to treatment. While many received regular monitoring, over 30% did not undergo regular molecular testing. The study concludes that expanding insurance coverage, lowering drug costs, and promoting standard monitoring could help improve outcomes for CML patients in China.
The Value of Targeted Sequencing in Advanced Cancer: DCE to Elicit the Public...Office of Health Economics
This project seeks to elicit the public’s preferences for different features of a genomic test to sequence advanced solid cancer tumours. Understanding the relative preferences for various attributes of targeted testing are useful for determining the value of sequencing approaches, and informing technology adoption decisions. A discrete choice experiment (DCE) survey was designed to assess the preferences of members of the Australian general public for targeted sequencing in advanced cancer. The survey presented respondents with 12 questions in which they had to choose between two unlabelled tests (Test A and Test B). Tests were specified in terms of five attributes: time to receive the test result; cost of the test; likelihood that the test result will lead to a change in treatment; length of time health care professionals spend describing the test; and type of health care team who explains the test result. Respondents were sampled from an online panel and also completed questions related to demographic and socio-economic factors, experiences of cancer and familial history. We found that cost, timeliness, expertise/location and likeliness of changing treatment regimes were identified as attributes of genomic sequencing that are most valuable to a sample of the public. These results will ultimately be compared with the results of an ongoing DCE being conducted with patients with advanced cancer who are undergoing sequencing.
Author(s) and affiliation(s): Paula Lorgelly (OHE), Grace Hampson (OHE), James Buchanan (Oxford), Melissa Martyn (MGHA), Jayesh Desai (PeterMac), Clara Gaff (MGHA), and iPREDICT MGHA Flagship collaborators
Conference/meeting: EuHEA 2018
Location: Maastricht, the Netherlands
Date: 12/07/2018
The goal of this webinar was to help healthcare professionals improve care coordination for patients with advanced illness and to reduce hospital readmissions and length of stay.
The document discusses various ways that nonprofit organizations partner with patients and the medical research community to advance research and drug development. It provides examples of how organizations fund research, develop tools and resources, facilitate clinical trials, advocate for policy changes, and build communities to accelerate the development of new treatments. Specific organizations highlighted include the Alzheimer's Drug Discovery Foundation, Juvenile Diabetes Research Foundation, Multiple Myeloma Research Foundation, ALS Therapy Development Institute, and Genetic Alliance.
The document discusses various ways that nonprofit organizations partner with patients and the medical research community to advance research and drug development. It provides examples of how organizations fund research, develop tools and resources, facilitate clinical trials, advocate for policy changes, and build communities to accelerate the development of new treatments. Specific organizations highlighted include the Alzheimer's Drug Discovery Foundation, Juvenile Diabetes Research Foundation, Multiple Myeloma Research Foundation, ALS Therapy Development Institute, and Genetic Alliance.
This document summarizes a presentation given by Adrian Towse on dimensions of value assessment and decision making. It discusses identifying elements of value, which usually include health effects and cost offsets but less frequently include other factors like patient preferences. Methods of assessing value discussed include using QALYs and categories/scales. The presentation also covers translating assessments of value to price and affordability, noting two main approaches of cost-effectiveness requirements and therapeutic added value requirements. It provides examples of using categories/scales to support different pricing approaches from various countries and organizations.
Technology Assessment, Outcomes Research and Economic Analysesevadew1
This document discusses technology assessment, outcomes research, and economic analyses in healthcare. It provides background on rising healthcare costs in the US and outlines a hierarchy for assessing new medical technologies from technical efficacy to patient and societal outcomes. Randomized controlled trials are described as the gold standard but limitations are noted. Alternative study designs like modeling and assessing intermediate outcomes are proposed when RCTs are not feasible. The document uses CT for appendicitis as an example to work through initial steps in outcomes research. It also discusses limitations and alternative outcomes like assessing the therapeutic value of diagnostic tests.
Determinants of Fall Risk and Injury in Hispanic Elderly Living in El Paso Community
Guillermina Solis, PhD, RN, F/GNP
Vanessa Guerrero, RN
Mano y Corazón Binational Conference of Multicultural Health Care Solutions, El Paso, Texas, September 27-28, 2013
This document provides an overview of career opportunities in pathology. It discusses what pathology involves, including diagnostic medicine and teaching. It outlines the various career options for pathologists, including community practice, academic practice, and industry roles. It also details the training and fellowship programs, subspecialties, job prospects, salaries, and lifestyle considerations for those in the pathology field.
Jesse Schold - USA - Tuesday 29 - Organ Allocation Optimizing donor-recipien...incucai_isodp
The document discusses several key considerations for determining the appropriate recipients for higher risk donor organs, such as expanded criteria donors. It notes that candidate acuity, prognosis without transplant, likelihood of retransplantation, waiting time, and patient preferences should all be considered. Studies have shown that higher risk organs can provide a survival benefit compared to remaining on dialysis, so allocation methods should aim to avoid organ discard.
The Cost of PH - How Do We Manage This? Duke Heart
This document discusses the high costs associated with pulmonary hypertension (PH) from multiple perspectives, including direct healthcare costs, indirect costs, and costs to individuals and society. Hospitalizations are identified as a major driver of costs. Earlier diagnosis and treatment, risk-guided escalation of therapy, and care at specialized centers can help reduce costs by preventing hospitalizations and disease progression. While medications and care are costly, lack of treatment results in poor outcomes and increased costs over time. Assistance programs help many patients afford needed therapies.
This document summarizes the results of the NUTRICOM study, which aimed to determine the impact of nutrition risk status on outcomes like hospitalization, quality of life, and costs among older adults. The study found that a significant portion of participants could not be fully assessed for nutrition risk due to a lack of recent weight or intake information. Preliminary baseline results showed high levels of malnutrition risk, functional impairment, and low quality of life, especially among those in intermediate care or recently discharged from the hospital. Next steps include analyzing changes in outcomes over time based on nutrition risk status and designing nutritional interventions to address issues across care settings.
Best Practices for a Data-driven Approach to Test UtilizationViewics
Would you like to learn how data-driven interventions can improve laboratory test utilization in your organization? Would you like to hear about the impact that leading hospitals/health systems and managed care organizations have made through these interventions?
If so, you might be interested in this presentation by utilization management expert Dr. Michael Astion, Medical Director at the Department of Laboratories at Seattle Children’s Hospital and Clinical Professor of Laboratory Medicine at the University of Washington.
In this presentation, Dr. Astion discusses the current state of the misuse of laboratory testing in the United States and some of the interventions that are being implemented to improve it. He covers a number of common areas of unnecessary testing — from pure abuse to tests that could be useful but are ordered inappropriately.
You'll learn about:
• Two areas of laboratory testing where misordering of tests occur frequently
• Three interventions to improve the value of testing for patients
• The role of genetic counselors and other laboratory professionals in improving lab test ordering
• The national endeavor known as PLUGS, the Pediatric Laboratory Utilization Guidance Service
This document discusses technology assessment, outcomes research, and economic analyses in healthcare. It provides background on rising healthcare costs in the US without clear improvements in health outcomes compared to other countries. The rationale for assessing new technologies and their impact is described. Key aspects of technology assessment are outlined, including technical efficacy, diagnostic accuracy, diagnostic impact, therapeutic impact, patient outcomes, and societal outcomes. Challenges with randomized controlled trials in assessing technologies are reviewed. The National Lung Screening Trial is presented as an example. Finally, computed tomography for appendicitis is analyzed as a hypothetical example of how modeling could be used to assess a technology when a randomized trial may not be feasible.
Financial Burden of Pediatric Cancer for Patients and their Familiesdylanturner22
This study examined the financial burden of pediatric cancer on 254 families treated at Primary Children's Hospital. Certain socioeconomic and healthcare utilization factors were associated with increased financial burden. For families 1-5 years post-diagnosis, factors like parental job changes, rural residence, and multiple unexpected hospitalizations predicted greater financial burden. The findings suggest certain costs accumulate over time and support recommendations to help families better manage expenses from the time of diagnosis through treatment.
Similar to Willingness to Pay and Quality of Life in Alopecia Areata (20)
Dr. Angela Christiano presented an update on genetic and immunological studies in alopecia areata. Her research is focused on defining the genetic basis of alopecia areata to clarify how the disease develops—a key initial step toward creating novel therapies. Dr. Christiano is the Richard and Mildred Rhodebeck Professor of Dermatology, Genetics and Development, Vice Chair for Basic Science Research in Dermatology, and Director of the Center for Human Genetics at Columbia University.
Dr. Leslie Castelo-Soccio presented an overview of what parents need to know about alopecia areata in children and adolescents, including the differences between pediatric and adult patients, and the risks and benefits of current and evolving off-label treatment options. Dr. Castelo-Soccio is Assistant Professor of Pediatrics and Dermatology at the University of Pennsylvania School of Medicine and head of the Pediatric Hair Clinic and Director of Research in Pediatric Dermatology at the Children’s Hospital of Philadelphia. Her clinical and academic research focus is on pediatric hair disorders.
Dr. Maria Hordinsky presented an overview of key things adults need to know about alopecia areata, including the risks and benefits of current and evolving off-label treatment options. Dr. Hordinsky is Professor and Head of the Department of Dermatology at the University of Minnesota. She is recognized for her clinical expertise in alopecia areata and hair diseases.
Dr. Natasha Mesinkovska, NAAF’s Chief Scientific Officer, presented the latest progress of NAAF’s Treatment Development Program and how your involvement is critical to developing treatments for alopecia areata. In addition to overseeing NAAF’s research efforts, Dr. Mesinkovska is Director of Clinical Research in Dermatology at the University of California Irvine.
Presented at the joint International Eczema Council and National Alopecia Areata Foundation Symposium, "Atopic Dermatitis and Alopecia Areata: Comparison and Contrast”, held during the 2019 Annual American Academy of Dermatology meeting in Washington, DC to explore the similarities and differences between these two common but complex skin diseases and the implications from bench to bedside.
Presented at the joint International Eczema Council and National Alopecia Areata Foundation Symposium, "Atopic Dermatitis and Alopecia Areata: Comparison and Contrast”, held during the 2019 Annual American Academy of Dermatology meeting in Washington, DC to explore the similarities and differences between these two common but complex skin diseases and the implications from bench to bedside.
Presented at the joint International Eczema Council and National Alopecia Areata Foundation Symposium, "Atopic Dermatitis and Alopecia Areata: Comparison and Contrast”, held during the 2019 Annual American Academy of Dermatology meeting in Washington, DC to explore the similarities and differences between these two common but complex skin diseases and the implications from bench to bedside.
Presented at the joint International Eczema Council and National Alopecia Areata Foundation Symposium, "Atopic Dermatitis and Alopecia Areata: Comparison and Contrast”, held during the 2019 Annual American Academy of Dermatology meeting in Washington, DC to explore the similarities and differences between these two common but complex skin diseases and the implications from bench to bedside.
AA is not necessarily a single disease entity, but rather a stereotypic hair follicle damage response pattern that can be triggered by various pathogenic mechanisms. In some patients with autoreactive T cells, AA represents an autoimmune disease (AAA), while in others it may occur in response to stress, infection, or dysbiosis without specific autoimmunity. The classic AA clinical presentation arises when hair follicle immune privilege collapses during the growth (anagen) phase, attracting inflammatory cells that secrete IFNγ and induce premature regression (catagen). While causal therapy targeting autoreactive T cells may be possible for AAA, symptomatic therapies aiming to protect immune privilege and repair follicle damage are generally beneficial across AA variants.
Presented at the joint International Eczema Council and National Alopecia Areata Foundation Symposium, "Atopic Dermatitis and Alopecia Areata: Comparison and Contrast”, held during the 2019 Annual American Academy of Dermatology meeting in Washington, DC to explore the similarities and differences between these two common but complex skin diseases and the implications from bench to bedside.
This document summarizes the key discussion points from a breakout group at a genetics, immunology, and therapeutic targets conference. The group discussed that while some new targets have been identified for alopecia areata, more exploration is needed into other potential targets, cell types, and signaling pathways. Questions remain about how to better stratify and select patients for current and new treatments. Additional resources are needed, including more funding for immunological and genetic studies, as well as research into the hair follicle biology and environmental factors. The North American Alopecia Areata Foundation can help by continuing to support exploratory research ideas, driving drug development, and convening research summits to define research priorities.
This document summarizes the discussions from a health economics and burden of disease breakout group on alopecia areata. The group discussed questions that still need answers around how alopecia areata impacts work, income, mental health, and patients' life courses. They also identified the need for partnerships to measure clinically relevant outcomes, better database access, and connections between stakeholders. The group suggested the North American Alopecia Areata Foundation could help fund research to address practice gaps, identify patients for research, and coordinate among pharmaceutical companies and payers.
This document summarizes a breakout group report on clinical outcome assessments for alopecia. It discusses several existing assessment measures, including the SALT Score, ALODEX Score, and Lesional Density Score. It notes that these measures have limitations and do not fully capture new areas of hair loss or incremental increases in density. The report identifies questions around defining meaningful response from both investigator and patient perspectives. It also outlines resources needed, such as tools to assess eyebrows/lashes, training for SALT scoring, and developing an overall assessment measure. The group recommends NAAF continue efforts to develop new outcome measures through stakeholder collaboration.
Discussion of the immune privilege collapse model of alopecia areata pathogenesis, available evidence to support this hypothetical scenario, and promising avenues for future investigation.
The FDA plans to prioritize improvements in the quality of demographic subgroup data collection, reporting and analysis, encourages greater participation of diverse patients, and supports the transparency of subgroup data. To this end, ways to recruit, engage, educate, and study those of diverse backgrounds to alopecia areata trials will be discussed.
The document summarizes research on identifying genetic risk factors for alopecia areata. It describes analyzing genetic data from over 700 patients to identify 64 candidate genes and 701 variants potentially involved in monogenic causes. Pathway analysis found these genes enriched for extracellular matrix functions. Further studies will validate co-segregation of variants in families and test for genetic burden using exome data from 10,000 controls. The research aims to elucidate pathogenesis by studying extracellular matrix integrity and signaling in patient samples.
Novel induction of alopecia areata in C3H/HeJ mice shows a potential role of previously unrecognized endogenous SSEA-positive myeloid cells in driving inflammatory cascade and hair loss mechanisms.
Expert clinicians and patients with alopecia areata were interviewed to develop a new outcome measure called the Alopecia Areata Investigator Global Assessment (AA-IGATM) to evaluate treatment success in clinical trials. Through iterative development and feedback, the measure was refined to a 5-grade scale assessing scalp hair loss from 0-100%. Both clinicians and patients agreed that regrowing hair to the 21-49% range defined as the 'Limited' category would be considered a clinically meaningful treatment success for patients originally having ≥50% scalp hair loss. The finalized AA-IGATM incorporates input from experienced clinicians and patients to capture what constitutes meaningful improvement from both perspectives.
Report on the progress of NAAF’s Patient-Reported Outcome (PRO) Consortium to develop a single, consensus-defined PRO instrument that can be shared across industry partners and other ongoing initiatives to incorporate the voice of the patient in alopecia areata research.
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Willingness to Pay and Quality of Life in Alopecia Areata
1. Willingness to pay and quality of life in
alopecia areata
Jean-Phillip Okhovat, Tristan Grogan, Lewei Duan, Carolyn Goh
2018 Alopecia Areata Research Summit
National Alopecia Areata Foundation
7. Patient characteristics Value, N (%)
Age, y (range) 40.5 (18-68)
Disease duration
<1 year
1-5 years
> 5 years
8 (20)
12 (30)
19 (48)
Male
Female
12 (30)
28 (70)
Race
Black
Asian
White
Multiple/other
3 (8)
14 (35)
15 (38)
8 (20)
Education
High school
2-year college
4- year college
Graduate school
Professional school
4 (10)
8 (20)
15 (38)
8 (20)
5 (13)
Annual income, US$
< 10,000
10,000-49,999
50,000-100,000
>100,000
9 (23)
4 (10)
14 (35)
13 (33)
10. Other findings and take home points
• Higher SALT scores correlated with higher AASIS scores
• WTP for AA was similar to that for vitiligo, atopic dermatitis, and
rosacea
• Median WTP as a percentage of monthly income was 10%-20%,
comparable to that of atopic dermatitis and psoriasis patients
• As expected, severity of disease was associated with quality of life,
and quality of life was associated with WTP
11. Other considerations
• What are other predictors of willingness to pay
• Role of health insurance in determining WTP
• Further ongoing research toward a cure for AA is warranted
Augustin et al (2018)
PLoS One
12. Thank You
• Dr. Carolyn Goh, UCLA
• Dr. Melvin Chiu, UCLA
• University of California, Los Angeles, Clinical and Translational Science Institute
• Hair Academic Innovative Research Unit, Massachusetts General Hospital
• Dr. Maryanne Senna
• Dustin Marks
• Dina Hagigeorges
• Athena Manatis Lornell