In This Week’s Issue:
1. PIPC Patient Blog: Seeing the Promise in Gene Therapy, click here to read the blog.
2. The PCORI Blog: PCORI at Age Seven: Results That Matter, with Much More to Come, click here to read the blog.
3. AHRQ: Academy Health Journal Accepting Manuscripts on Patient-Centered Clinical Decision Support, Deadline: Wednesday, Jan. 31 click here to submit.
4. EHRIntelligence: Apple Debuts Patient-Centered EHRs With Health Records App, click here to read the article.
5. Paper: Patient Variability Seldom Assessed in Cost-Effectiveness Studies, click here to read the blog.
6. Submit 2018 Fly-Ins, Advocacy Days and Conferences to Democratic Caucus, click here to submit.
7. Upcoming Events and Webinars, see details below.
8. Medical Journal Articles, see details below.
9. AHRQ Effective Program Updates, see details below.
1. PIPC Patient Blog: Seeing the Promise in Gene Therapy, click here to read the blog.
2. The PCORI Blog: PCORI at Age Seven: Results That Matter, with Much More to Come, click here to read the blog.
3. AHRQ: Academy Health Journal Accepting Manuscripts on Patient-Centered Clinical Decision Support, Deadline: Wednesday, Jan. 31 click here to submit.
4. EHRIntelligence: Apple Debuts Patient-Centered EHRs With Health Records App, click here to read the article.
5. Paper: Patient Variability Seldom Assessed in Cost-Effectiveness Studies, click here to read the blog.
6. Submit 2018 Fly-Ins, Advocacy Days and Conferences to Democratic Caucus, click here to submit.
7. Upcoming Events and Webinars, see details below.
8. Medical Journal Articles, see details below.
9. AHRQ Effective Program Updates, see details below.
1. PIPC Patient Blog: Seeing the Promise in Gene Therapy
In a new PIPC Patient blog, Janni Lehrer-Stein writes about the importance of the first gene therapy for inherited diseases. She notes that in order to reach patients and change lives for the better, the government, industry, patients and consumers must work together to develop a new framework for covering this kind of drug therapy. “Alternative payment models such as outcomes-based rebate models are aligned with a pay-for-performance approach, requiring the manufacturer to stand behind the efficacy and durability of the treatment — in this case, a one-dose treatment. And by embracing the principles of paying for ‘value,' both public and private payers are laying the necessary foundation for patient access in a world of 21st century cures.”
“The health science industry is making great strides toward developing cures for once incurable diseases. That includes preventions and cures for inherited retinal diseases that for me and millions of people like me, robbed us of our sight. An organization I’m proud to be a part of, the Foundation Fighting Blindness, has helped drive such research in the inherited blindness space. But any new treatment is only as good as a patient’s access to it.” Click here to read the blog.
2. The PCORI Blog: PCORI at Age Seven: Results That Matter, with Much More to Come
Joe Selby recaps PCORI research and activity in 2017, as well as some of PCORI’s undertakings for 2018 in The PCORI Blog. “As we start a new year, I'd like to take a moment to share with you some of PCORI's major accomplishments over the past 12 months and some of what we're looking forward to in the months to come. I'm happy to say that we have a lot to be proud of, a lot to suggest that PCORI is meeting its mandate to generate and provide data needed by those making healthcare decisions and choices—patients, caregivers, clinicians, and payers.” Click here to read the blog.
3. AHRQ: Academy Health Journal Accepting Manuscripts on Patient-Centered Clinical Decision Support
AcademyHealth’s eGEMS, the Journal for Electronic Health Data and Methods, is accepting manuscripts that highlight research in patient-centered clinical decision support to address emerging issues within health systems, advance health care quality and improve outcomes and health equity. “A new eGEMS special section, announced recently in an Academy Health blog post, will highlight novel approaches and thinking in this area. AHRQ supports eGEMS, the Patient-Centered Clinical Decision Support Learning Network and other initiatives that advance the science of how patients and providers can make decisions together using the best available evidence. There is no fee to submit an eGEMS manuscript and the deadline is this Wednesday, January 31.” Click here to submit.
4. EHRIntelligence: Apple Debuts Patient-Centered EHRs With Health Records App
Kate Monica reports in EHRIntelligence on the new Apple Health Records app that allows patients at 12 participating hospitals to see comprehensive, patient-centered EHRs on iOS devices. “Apple recently launched its Health Records app to provide users with a comprehensive view of patient-centered EHRs on iOS devices. Health Records is available as an update through Apple’s existing Health app. The update allows patients at participating hospitals and clinics to view their complete health data from multiple providers at any time. Johns Hopkins Medicine, Cedars-Sinai, Penn Medicine, Rush University Medical Center, and Cerner Healthe Clinic are among the first to make the feature available to patients. Health Records is based on the Health Level Seven (HL7) application programming interface (API) Fast Healthcare Interoperability Resources (FHIR).” Click here to read the article.
5. Paper: Patient Variability Seldom Assessed in Cost-Effectiveness Studies
A recent paper from Medical Decision Making finds that patient subgroup analyses are rarely performed in cost-effective analysis. “ Cost-effectiveness analysis (CEA) estimates can vary substantially across patient subgroups when patient characteristics influence preferences, outcome risks, treatment effectiveness, life expectancy, or associated costs. However, no systematic review has reported the frequency of subgroup analysis in CEA, what type of heterogeneity they address, and how often heterogeneity influences whether cost-effectiveness ratios exceed or fall below conventional thresholds. Most CEAs do not report any subgroup results, and those that do most often stratify only by patient age. Over half of the subgroup analyses reported could lead to different value-based decision making for at least some patients.” Click here to read the paper.
6. Submit 2018 Fly-Ins, Advocacy Days and Conferences to Democratic Caucus
The House Democratic Whip’s office is compiling a list of fly-ins, advocacy days, and conferences that will be taking place throughout the year. This information will be shared with all House Democratic offices and used for a variety of purposes including scheduling and messaging. Click here to submit, and we urge you to share the information with PIPC as well at [email protected]!
7. Upcoming Events and Webinars
PCORI Board of Governors Meeting
January 23, 2018
Click here for details.
Pragmatic Clinical Studies Applicant Town Hall - Cycle 1 2018
January 29, 2018
Click here for details.
Improving Methods PFA Applicant Town Hall - Cycle 1 2018
January 30, 2018
Click here for details.
Precision Medicine: Expanding Opportunities
January 31, 2018
Click here for details.
Broad PFAs Applicant Town Hall - Cycle 1 2018
February 1, 2018
Click here for details.
Health Affairs and NPC Forum on Health Spending: Tackling The Big Issues
February 1, 2018
Click here for details.
NPC @ 2018 AcademyHealth National Health Policy Conference
February 5 - 6, 2018
Click here for details.
Ensuring the Patient Voice in Quality: An Educational Program for Patient Groups and Advocates
February 15, 2018
Click here for details.
DIA 2018 Global Annual Meeting
June 24-28, 2018
Click here for details.
8. Medical Journal Articles
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.
Viewpoint: Funding Innovation in a Learning Health Care System, click here to view.
Including the Patient Voice in Patient-Centered Outcomes Research in Integrative Oncology, click here to view.
Patient and Provider Perspectives on Shared Decision Making: A Systematic Review of the Peer-Reviewed Literature, click here to view.
Gene Therapy: Evidence, Value and Affordability in the US Health Care System, click here to view.
Patient Value: Perspectives from the Advocacy Community, click here to view.
The Added Value of Integrate-HTA Guidance in the Work Processes of Health Technology Assessment Agencies, click here to view.
Practicalities Of Using Real-World Evidence (RWE) In Comparative Effectiveness Research (CER): Learnings From Imi-Getreal, click here to view.
9. AHRQ Effective Program Updates
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.
Stroke Prevention in Atrial Fibrillation Patients: A Systematic Review Update, click here to view.
Venous Thromboembolism Prophylaxis in Major Orthopedic Surgery: Systematic Review Update, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update -- Research Protocol, click here to view.
Drug Therapy for Early Rheumatoid Arthritis in Adults – An Update -- Research Protocol, click here to view.
Psychological and Pharmacological Treatments for Adults with Posttraumatic Stress Disorder (PTSD): A Systematic Review Update -- Research Protocol, click here to view
In a new PIPC Patient blog, Janni Lehrer-Stein writes about the importance of the first gene therapy for inherited diseases. She notes that in order to reach patients and change lives for the better, the government, industry, patients and consumers must work together to develop a new framework for covering this kind of drug therapy. “Alternative payment models such as outcomes-based rebate models are aligned with a pay-for-performance approach, requiring the manufacturer to stand behind the efficacy and durability of the treatment — in this case, a one-dose treatment. And by embracing the principles of paying for ‘value,' both public and private payers are laying the necessary foundation for patient access in a world of 21st century cures.”
“The health science industry is making great strides toward developing cures for once incurable diseases. That includes preventions and cures for inherited retinal diseases that for me and millions of people like me, robbed us of our sight. An organization I’m proud to be a part of, the Foundation Fighting Blindness, has helped drive such research in the inherited blindness space. But any new treatment is only as good as a patient’s access to it.” Click here to read the blog.
2. The PCORI Blog: PCORI at Age Seven: Results That Matter, with Much More to Come
Joe Selby recaps PCORI research and activity in 2017, as well as some of PCORI’s undertakings for 2018 in The PCORI Blog. “As we start a new year, I'd like to take a moment to share with you some of PCORI's major accomplishments over the past 12 months and some of what we're looking forward to in the months to come. I'm happy to say that we have a lot to be proud of, a lot to suggest that PCORI is meeting its mandate to generate and provide data needed by those making healthcare decisions and choices—patients, caregivers, clinicians, and payers.” Click here to read the blog.
3. AHRQ: Academy Health Journal Accepting Manuscripts on Patient-Centered Clinical Decision Support
AcademyHealth’s eGEMS, the Journal for Electronic Health Data and Methods, is accepting manuscripts that highlight research in patient-centered clinical decision support to address emerging issues within health systems, advance health care quality and improve outcomes and health equity. “A new eGEMS special section, announced recently in an Academy Health blog post, will highlight novel approaches and thinking in this area. AHRQ supports eGEMS, the Patient-Centered Clinical Decision Support Learning Network and other initiatives that advance the science of how patients and providers can make decisions together using the best available evidence. There is no fee to submit an eGEMS manuscript and the deadline is this Wednesday, January 31.” Click here to submit.
4. EHRIntelligence: Apple Debuts Patient-Centered EHRs With Health Records App
Kate Monica reports in EHRIntelligence on the new Apple Health Records app that allows patients at 12 participating hospitals to see comprehensive, patient-centered EHRs on iOS devices. “Apple recently launched its Health Records app to provide users with a comprehensive view of patient-centered EHRs on iOS devices. Health Records is available as an update through Apple’s existing Health app. The update allows patients at participating hospitals and clinics to view their complete health data from multiple providers at any time. Johns Hopkins Medicine, Cedars-Sinai, Penn Medicine, Rush University Medical Center, and Cerner Healthe Clinic are among the first to make the feature available to patients. Health Records is based on the Health Level Seven (HL7) application programming interface (API) Fast Healthcare Interoperability Resources (FHIR).” Click here to read the article.
5. Paper: Patient Variability Seldom Assessed in Cost-Effectiveness Studies
A recent paper from Medical Decision Making finds that patient subgroup analyses are rarely performed in cost-effective analysis. “ Cost-effectiveness analysis (CEA) estimates can vary substantially across patient subgroups when patient characteristics influence preferences, outcome risks, treatment effectiveness, life expectancy, or associated costs. However, no systematic review has reported the frequency of subgroup analysis in CEA, what type of heterogeneity they address, and how often heterogeneity influences whether cost-effectiveness ratios exceed or fall below conventional thresholds. Most CEAs do not report any subgroup results, and those that do most often stratify only by patient age. Over half of the subgroup analyses reported could lead to different value-based decision making for at least some patients.” Click here to read the paper.
6. Submit 2018 Fly-Ins, Advocacy Days and Conferences to Democratic Caucus
The House Democratic Whip’s office is compiling a list of fly-ins, advocacy days, and conferences that will be taking place throughout the year. This information will be shared with all House Democratic offices and used for a variety of purposes including scheduling and messaging. Click here to submit, and we urge you to share the information with PIPC as well at [email protected]!
7. Upcoming Events and Webinars
PCORI Board of Governors Meeting
January 23, 2018
Click here for details.
Pragmatic Clinical Studies Applicant Town Hall - Cycle 1 2018
January 29, 2018
Click here for details.
Improving Methods PFA Applicant Town Hall - Cycle 1 2018
January 30, 2018
Click here for details.
Precision Medicine: Expanding Opportunities
January 31, 2018
Click here for details.
Broad PFAs Applicant Town Hall - Cycle 1 2018
February 1, 2018
Click here for details.
Health Affairs and NPC Forum on Health Spending: Tackling The Big Issues
February 1, 2018
Click here for details.
NPC @ 2018 AcademyHealth National Health Policy Conference
February 5 - 6, 2018
Click here for details.
Ensuring the Patient Voice in Quality: An Educational Program for Patient Groups and Advocates
February 15, 2018
Click here for details.
DIA 2018 Global Annual Meeting
June 24-28, 2018
Click here for details.
8. Medical Journal Articles
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.
Viewpoint: Funding Innovation in a Learning Health Care System, click here to view.
Including the Patient Voice in Patient-Centered Outcomes Research in Integrative Oncology, click here to view.
Patient and Provider Perspectives on Shared Decision Making: A Systematic Review of the Peer-Reviewed Literature, click here to view.
Gene Therapy: Evidence, Value and Affordability in the US Health Care System, click here to view.
Patient Value: Perspectives from the Advocacy Community, click here to view.
The Added Value of Integrate-HTA Guidance in the Work Processes of Health Technology Assessment Agencies, click here to view.
Practicalities Of Using Real-World Evidence (RWE) In Comparative Effectiveness Research (CER): Learnings From Imi-Getreal, click here to view.
9. AHRQ Effective Program Updates
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.
Stroke Prevention in Atrial Fibrillation Patients: A Systematic Review Update, click here to view.
Venous Thromboembolism Prophylaxis in Major Orthopedic Surgery: Systematic Review Update, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update -- Research Protocol, click here to view.
Drug Therapy for Early Rheumatoid Arthritis in Adults – An Update -- Research Protocol, click here to view.
Psychological and Pharmacological Treatments for Adults with Posttraumatic Stress Disorder (PTSD): A Systematic Review Update -- Research Protocol, click here to view
