In This Week’s Issue:
1. The Hill: PIPC Chairman calls on Congress to Protect Patients from MedPAC Consideration of Cost-per-QALY in Medicare, click here to read the op-ed.
2. PIPC Submits Comments to Senators Addressing Barriers to Price and Information Transparency, click here to read the letter.
3. Health Affairs Blog: The Need For A New Patient-Centered Decision Tool For Value-Based Treatment Choices In Oncology, click here to read the blog.
4. PatientEngagementHIT: How to Use Patient Outreach Technology in Patient-Centered Care, click here to read the article.
5. AHRQ: Bringing the Patient Voice to Evidence Generation: Patient Engagement in Disease Registries, click here to read the blog.
6. Brown Daily Herald: Study shows half of patients forget doctors’ instructions, click here to read the article.
7. PCORI Seeking New Patient Engagement Advisory Panel Members, click here to apply
8. FDA Public Meeting: Evaluating Inclusion and Exclusion Criteria in Clinical Trials, click here to register.
9. GAO Report: Comparative Effectiveness Research: Activities Funded by the Patient Centered Outcomes Research Trust Fund, click here to read the report.
10. Upcoming Events and Webinars, see details below.
11. Medical Journal Articles, see details below.
12. AHRQ Effective Program Updates, see details below.
1. The Hill: PIPC Chairman calls on Congress to Protect Patients from MedPAC Consideration of Cost-per-QALY in Medicare, click here to read the op-ed.
2. PIPC Submits Comments to Senators Addressing Barriers to Price and Information Transparency, click here to read the letter.
3. Health Affairs Blog: The Need For A New Patient-Centered Decision Tool For Value-Based Treatment Choices In Oncology, click here to read the blog.
4. PatientEngagementHIT: How to Use Patient Outreach Technology in Patient-Centered Care, click here to read the article.
5. AHRQ: Bringing the Patient Voice to Evidence Generation: Patient Engagement in Disease Registries, click here to read the blog.
6. Brown Daily Herald: Study shows half of patients forget doctors’ instructions, click here to read the article.
7. PCORI Seeking New Patient Engagement Advisory Panel Members, click here to apply
8. FDA Public Meeting: Evaluating Inclusion and Exclusion Criteria in Clinical Trials, click here to register.
9. GAO Report: Comparative Effectiveness Research: Activities Funded by the Patient Centered Outcomes Research Trust Fund, click here to read the report.
10. Upcoming Events and Webinars, see details below.
11. Medical Journal Articles, see details below.
12. AHRQ Effective Program Updates, see details below.
1. The Hill: PIPC Chairman Calls on Congress to Protect Patients from MedPAC Consideration of Cost-Per-QALY in Medicare
PIPC’s Chairman Tony Coelho penned an op-ed in The Hill outlining his concerns with MedPAC’s pursuit of cost-effective analysis to make coverage and reimbursement decisions. “As MedPAC considers whether cost-effectiveness has a place in Medicare payment policy, there is good reason to be concerned about the implications of health-care coverage policy built on population-based value assessments. For people with disabilities and patients with chronic conditions who may or may not be cured, access to treatments and health interventions can be essential in improving their quality of life. And because cost-effectiveness models systematically disadvantage the most complex patients, these communities have a long history opposing the use of QALYs as the benchmark to measure the value of health care interventions.” Click here to read the op-ed.
2. PIPC Submits Comments to Senators Addressing Barriers to Price and Information Transparency
PIPC has submitted comments to a group of bipartisan senators who requested information on barriers to price and information transparency in health care. “Empowering patients is the missing step to improving quality of healthcare and lowering healthcare costs. Innovation and patient- centered outcomes research makes care tailored to individual patients possible based on our increased understanding of the differential impact of treatments on diverse patients. With increased availability of information about treatments, patients will be empowered to be self- advocates for higher quality healthcare.” Click here to read the letter.
3. Health Affairs Blog: The Need For A New Patient-Centered Decision Tool For Value-Based Treatment Choices In Oncology
In a blog for Health Affairs, Jalpa A. Doshi, Ellen Miller Sonet, Justin T. Puckett and Henry Glick stress the need for patient-centered decision making tools to evaluate the best treatment choices in oncology. "...So how do we develop and implement a patient-centered decision tool for value-based treatment choices that truly meets the goals and priorities of cancer patients in daily clinical practice? The Patient-Perspective Value Framework, recently developed by Avalere/FasterCures, is an important first attempt to capture a more comprehensive set of factors that are relevant and important to patients. However, it is a generic framework in the early stages of development and is not specifically tailored for shared decision making in cancer. Click here to read the blog.
4. PatientEngagementHIT: How to Use Patient Outreach Technology in Patient-Centered Care
Sara Heath notes that patient outreach technology helped to reduce patient no-shows while preserving compassionate and personal care in an article for PatientEnagementHIT. “As medical practices seek to close gaps in care and reduce patient no-show rates, many may be turning to patient outreach technology to better connect with patients. But in an industry seeing technology emerge at lightning speed, some medical professionals may have concerns with the impact on compassionate, personalized connection. At Grunberger Diabetes Institute (GDI), patient outreach technology did not need to trump genuine patient-provider connections, according to the practice’s office manager, Lynne Frazier. Instead, these technologies built upon the practice’s longstanding commitment to patient relationships while addressing care access issues.” Click here to read the article.
5. AHRQ: Bringing the Patient Voice to Evidence Generation: Patient Engagement in Disease Registries
In AHRQ Views, Arlene Bierman outlines the goals of AHRQ 2.0 which includes additional patient engagement in disease registries. “...We are pleased to announce that we are adding a new online resource that recognizes the critical role of the patient perspective and patient-reported outcomes: the 21st Century Patient Registries report. This report is an e-book addendum to AHRQ's Registries for Evaluating Patient Outcomes: A User's Guide. Its chapters focus on engaging with patients throughout the design and conduct of registries; methodological considerations for using digital health technologies in registries; designing direct-to-patient and other patient-centric studies; and building registry networks that allow greater use and sharing of information.” Click here to read the blog.
6. Brown Daily Herald: Study shows half of patients forget doctors’ instructions
Chris Schutte notes that researchers suggest the use of an appointment agenda and encourage physician-patient communication in The Brown Daily Herald. “...In a pilot project funded by the Patient-Centered Outcomes Research Institute, the team recorded meetings between physicians and patients and later asked them to recall the interaction, [Michael Barton Laws] said. Although some patients could recall a good portion of the visit once prompted, the majority could remember only one to two thirds of the doctor's recommendations from the same visit, he added.” Click here to read the article.
7. PCORI Seeking New Patient Engagement Advisory Panel Members
A fantastic opportunity for patient engagement! PCORI is now accepting applications and nominations for the 2018 Advisory Panel member selection cycle. “According to our authorizing legislation, advisory panels must include representatives of practicing and research clinicians, patients, and experts in scientific and health services research, health services delivery, and evidence-based medicine who have experience in the relevant topic, and, as appropriate, experts in integrative health and primary prevention strategies.” Click here to apply. Deadline: Friday, March 30.
8. FDA Public Meeting: Evaluating Inclusion and Exclusion Criteria in Clinical Trials
The FDA is folding a public meeting on April 16 to discuss how to improve eligibility criteria for clinical trials to better represent the broader patient population and increase diversity. “Convened by the Duke-Robert J. Margolis, MD, Center for Health Policy at Duke University and supported by a cooperative agreement with FDA, this public event will bring the stakeholder community together to discuss a variety of topics related to eligibility criteria in clinical trials, their potential impact on patient access to investigational drugs, and how they might facilitate the enrollment of a diverse patient population. Other topics that will be addressed during the public meeting include alternative clinical trial designs that may increase enrollment of more diverse patient populations, as well as opportunities for using data from expanded access trials.” Click here to register.
9. GAO Report: Comparative Effectiveness Research: Activities Funded by the Patient Centered Outcomes Research Trust Fund
The Government Accountability office has published a report highlighting activities funded by PCORI. “The Patient Protection and Affordable Care Act established a fund to support research comparing the effectiveness of available treatments. This research can help patients, doctors, and others make decisions to improve health care. We found that the Patient-Centered Outcomes Research Institute and Department of Health and Human Services expect to receive about $4 billion from the fund by the end of fiscal year 2019. The money has primarily funded research and helped facilitate getting findings to the patients, doctors, and others who can use them. Most of the funded research will be completed in the coming years.” Click here to read the report.
10. Upcoming Events and Webinars
Webinar: Health Care Coverage Challenges: New Treatments With High Upfront Costs, Long-term Benefits and Delayed Savings
March 29, 2018
Click here for details.
Advisory Panel on Healthcare Delivery and Disparities Research Spring 2018 Meeting
April 11, 2018
Click here for details.
Advisory Panel on Patient Engagement Spring 2018 Meeting
April 19-20, 2018
Click here for details.
2018 Patient Centered Outcomes Research Symposium
April 25, 2018
Click here for details.
PCORI Board of Governors Meeting
April 30, 2018
Click here for details
DIA 2018 Global Annual Meeting
June 24-28, 2018
Click here for details.
11. Medical Journal Articles
Pharmaceutical Benefit Managers, Brand-Name Drug Prices, and Patient Cost Sharing, click here to view.
Frequency and Magnitude of Co-Payments Exceeding Prescription Drug Costs, click here to view.
Factors Contributing to Higher Health Care Spending in the United States Compared With Other High-Income Countries, click here to view.
PCORnet's Collaborative Research Groups, click here to view.
Increasing Uptake of Comparative Effectiveness and Patient-Centered Outcomes Research Among Stakeholders: Insights from Conference Discussion, click here to view.
Comparative Effectiveness and Patient-Centered Outcomes Research: Enhancing Uptake and Use by Patients, Clinicians and Payers, click here to view.
Comparative Effectiveness Research Requires Competitive Effectiveness, click here to view.
What Parents of Children With Complex Medical Conditions Want Their Child’s Physicians to Understand, click here to view.
PCORnet's Collaborative Research Groups, click here to view.
Guidelines for Patient-Reported Outcomes in Clinical Trial Protocols, click here to view.
Ensuring the Patient Voice in Quality: An Educational Program for Patient Groups and Advocates, click here to view.
Patient-Reported Outcomes: Design with the End in Mind, click here to view.
Beliefs, Critical Thinking and Evidence-Based Medicine, click here to view.
Changes in patient-centered attitude and confidence in communicating with patients: a longitudinal study of resident physicians, click here to view.
January Issue: Journal of Comparative Effectiveness Research, click here to view.
Toward Patient-Centered Outcomes for Cognitive Evaluations: The Perspective of Those Affected by Parkinson's Disease, click here to view.
12. AHRQ Effective Program Updates
Library of Common Data Definitions: Atrial Fibrillation, click here to view.
Library of Common Data Definitions: Asthma, click here to view.
Patient or Participant Generated Registries, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
Prioritization and Selection of Harms for Inclusion in Systematic Reviews, click here to view.
Attention Deficit Hyperactivity Disorder: Diagnosis and Treatment in Children and Adolescents, click here to view.
A Framework for Conceptualizing Evidence Needs of Health Systems, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update, click here to view.
Drug Therapy for Early Rheumatoid Arthritis: A Systematic Review Update, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
Management of Insomnia Disorder - Consumer and Clinician Summaries, click here to view
Harms of First-Line Depression Treatment in Older Adults, click here to view.
Management of Renal Masses and Localized Renal Cell Carcinoma: Current State of the Evidence - Clinician Summary, click here to view.
PIPC’s Chairman Tony Coelho penned an op-ed in The Hill outlining his concerns with MedPAC’s pursuit of cost-effective analysis to make coverage and reimbursement decisions. “As MedPAC considers whether cost-effectiveness has a place in Medicare payment policy, there is good reason to be concerned about the implications of health-care coverage policy built on population-based value assessments. For people with disabilities and patients with chronic conditions who may or may not be cured, access to treatments and health interventions can be essential in improving their quality of life. And because cost-effectiveness models systematically disadvantage the most complex patients, these communities have a long history opposing the use of QALYs as the benchmark to measure the value of health care interventions.” Click here to read the op-ed.
2. PIPC Submits Comments to Senators Addressing Barriers to Price and Information Transparency
PIPC has submitted comments to a group of bipartisan senators who requested information on barriers to price and information transparency in health care. “Empowering patients is the missing step to improving quality of healthcare and lowering healthcare costs. Innovation and patient- centered outcomes research makes care tailored to individual patients possible based on our increased understanding of the differential impact of treatments on diverse patients. With increased availability of information about treatments, patients will be empowered to be self- advocates for higher quality healthcare.” Click here to read the letter.
3. Health Affairs Blog: The Need For A New Patient-Centered Decision Tool For Value-Based Treatment Choices In Oncology
In a blog for Health Affairs, Jalpa A. Doshi, Ellen Miller Sonet, Justin T. Puckett and Henry Glick stress the need for patient-centered decision making tools to evaluate the best treatment choices in oncology. "...So how do we develop and implement a patient-centered decision tool for value-based treatment choices that truly meets the goals and priorities of cancer patients in daily clinical practice? The Patient-Perspective Value Framework, recently developed by Avalere/FasterCures, is an important first attempt to capture a more comprehensive set of factors that are relevant and important to patients. However, it is a generic framework in the early stages of development and is not specifically tailored for shared decision making in cancer. Click here to read the blog.
4. PatientEngagementHIT: How to Use Patient Outreach Technology in Patient-Centered Care
Sara Heath notes that patient outreach technology helped to reduce patient no-shows while preserving compassionate and personal care in an article for PatientEnagementHIT. “As medical practices seek to close gaps in care and reduce patient no-show rates, many may be turning to patient outreach technology to better connect with patients. But in an industry seeing technology emerge at lightning speed, some medical professionals may have concerns with the impact on compassionate, personalized connection. At Grunberger Diabetes Institute (GDI), patient outreach technology did not need to trump genuine patient-provider connections, according to the practice’s office manager, Lynne Frazier. Instead, these technologies built upon the practice’s longstanding commitment to patient relationships while addressing care access issues.” Click here to read the article.
5. AHRQ: Bringing the Patient Voice to Evidence Generation: Patient Engagement in Disease Registries
In AHRQ Views, Arlene Bierman outlines the goals of AHRQ 2.0 which includes additional patient engagement in disease registries. “...We are pleased to announce that we are adding a new online resource that recognizes the critical role of the patient perspective and patient-reported outcomes: the 21st Century Patient Registries report. This report is an e-book addendum to AHRQ's Registries for Evaluating Patient Outcomes: A User's Guide. Its chapters focus on engaging with patients throughout the design and conduct of registries; methodological considerations for using digital health technologies in registries; designing direct-to-patient and other patient-centric studies; and building registry networks that allow greater use and sharing of information.” Click here to read the blog.
6. Brown Daily Herald: Study shows half of patients forget doctors’ instructions
Chris Schutte notes that researchers suggest the use of an appointment agenda and encourage physician-patient communication in The Brown Daily Herald. “...In a pilot project funded by the Patient-Centered Outcomes Research Institute, the team recorded meetings between physicians and patients and later asked them to recall the interaction, [Michael Barton Laws] said. Although some patients could recall a good portion of the visit once prompted, the majority could remember only one to two thirds of the doctor's recommendations from the same visit, he added.” Click here to read the article.
7. PCORI Seeking New Patient Engagement Advisory Panel Members
A fantastic opportunity for patient engagement! PCORI is now accepting applications and nominations for the 2018 Advisory Panel member selection cycle. “According to our authorizing legislation, advisory panels must include representatives of practicing and research clinicians, patients, and experts in scientific and health services research, health services delivery, and evidence-based medicine who have experience in the relevant topic, and, as appropriate, experts in integrative health and primary prevention strategies.” Click here to apply. Deadline: Friday, March 30.
8. FDA Public Meeting: Evaluating Inclusion and Exclusion Criteria in Clinical Trials
The FDA is folding a public meeting on April 16 to discuss how to improve eligibility criteria for clinical trials to better represent the broader patient population and increase diversity. “Convened by the Duke-Robert J. Margolis, MD, Center for Health Policy at Duke University and supported by a cooperative agreement with FDA, this public event will bring the stakeholder community together to discuss a variety of topics related to eligibility criteria in clinical trials, their potential impact on patient access to investigational drugs, and how they might facilitate the enrollment of a diverse patient population. Other topics that will be addressed during the public meeting include alternative clinical trial designs that may increase enrollment of more diverse patient populations, as well as opportunities for using data from expanded access trials.” Click here to register.
9. GAO Report: Comparative Effectiveness Research: Activities Funded by the Patient Centered Outcomes Research Trust Fund
The Government Accountability office has published a report highlighting activities funded by PCORI. “The Patient Protection and Affordable Care Act established a fund to support research comparing the effectiveness of available treatments. This research can help patients, doctors, and others make decisions to improve health care. We found that the Patient-Centered Outcomes Research Institute and Department of Health and Human Services expect to receive about $4 billion from the fund by the end of fiscal year 2019. The money has primarily funded research and helped facilitate getting findings to the patients, doctors, and others who can use them. Most of the funded research will be completed in the coming years.” Click here to read the report.
10. Upcoming Events and Webinars
Webinar: Health Care Coverage Challenges: New Treatments With High Upfront Costs, Long-term Benefits and Delayed Savings
March 29, 2018
Click here for details.
Advisory Panel on Healthcare Delivery and Disparities Research Spring 2018 Meeting
April 11, 2018
Click here for details.
Advisory Panel on Patient Engagement Spring 2018 Meeting
April 19-20, 2018
Click here for details.
2018 Patient Centered Outcomes Research Symposium
April 25, 2018
Click here for details.
PCORI Board of Governors Meeting
April 30, 2018
Click here for details
DIA 2018 Global Annual Meeting
June 24-28, 2018
Click here for details.
11. Medical Journal Articles
Pharmaceutical Benefit Managers, Brand-Name Drug Prices, and Patient Cost Sharing, click here to view.
Frequency and Magnitude of Co-Payments Exceeding Prescription Drug Costs, click here to view.
Factors Contributing to Higher Health Care Spending in the United States Compared With Other High-Income Countries, click here to view.
PCORnet's Collaborative Research Groups, click here to view.
Increasing Uptake of Comparative Effectiveness and Patient-Centered Outcomes Research Among Stakeholders: Insights from Conference Discussion, click here to view.
Comparative Effectiveness and Patient-Centered Outcomes Research: Enhancing Uptake and Use by Patients, Clinicians and Payers, click here to view.
Comparative Effectiveness Research Requires Competitive Effectiveness, click here to view.
What Parents of Children With Complex Medical Conditions Want Their Child’s Physicians to Understand, click here to view.
PCORnet's Collaborative Research Groups, click here to view.
Guidelines for Patient-Reported Outcomes in Clinical Trial Protocols, click here to view.
Ensuring the Patient Voice in Quality: An Educational Program for Patient Groups and Advocates, click here to view.
Patient-Reported Outcomes: Design with the End in Mind, click here to view.
Beliefs, Critical Thinking and Evidence-Based Medicine, click here to view.
Changes in patient-centered attitude and confidence in communicating with patients: a longitudinal study of resident physicians, click here to view.
January Issue: Journal of Comparative Effectiveness Research, click here to view.
Toward Patient-Centered Outcomes for Cognitive Evaluations: The Perspective of Those Affected by Parkinson's Disease, click here to view.
12. AHRQ Effective Program Updates
Library of Common Data Definitions: Atrial Fibrillation, click here to view.
Library of Common Data Definitions: Asthma, click here to view.
Patient or Participant Generated Registries, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
Prioritization and Selection of Harms for Inclusion in Systematic Reviews, click here to view.
Attention Deficit Hyperactivity Disorder: Diagnosis and Treatment in Children and Adolescents, click here to view.
A Framework for Conceptualizing Evidence Needs of Health Systems, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update, click here to view.
Drug Therapy for Early Rheumatoid Arthritis: A Systematic Review Update, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
Management of Insomnia Disorder - Consumer and Clinician Summaries, click here to view
Harms of First-Line Depression Treatment in Older Adults, click here to view.
Management of Renal Masses and Localized Renal Cell Carcinoma: Current State of the Evidence - Clinician Summary, click here to view.
