In This Week’s Issue:
1. Dr. Selby: Patient-Centered Care Requires Breaking Old Traditions, click here to read the op-ed
2. Global Healthy Living Foundation to Present at the VA Medical Device Registry Summit, click here to read the press release.
3. Briefing — Endometriosis: Erasing Stigma, Improving Patient Care, click here to RSVP.
4. Request for Comment: AHRQ Library of Patient-Centered Outcomes Research Resources, click here for details.
5. PCORI Board of Governors Meeting: April 30, 2018, click here to view.
6. Patient EngagementHIT: AHA Launches Strategy for Patient-Centered Care for Aging Patients, click here to read the article.
7. FDA Meeting for Patient-Focused Drug Development on Chronic Pain, click here to register.
8. Upcoming Events and Webinars, see details below.
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.
1. Dr. Selby: Patient-Centered Care Requires Breaking Old Traditions, click here to read the op-ed
2. Global Healthy Living Foundation to Present at the VA Medical Device Registry Summit, click here to read the press release.
3. Briefing — Endometriosis: Erasing Stigma, Improving Patient Care, click here to RSVP.
4. Request for Comment: AHRQ Library of Patient-Centered Outcomes Research Resources, click here for details.
5. PCORI Board of Governors Meeting: April 30, 2018, click here to view.
6. Patient EngagementHIT: AHA Launches Strategy for Patient-Centered Care for Aging Patients, click here to read the article.
7. FDA Meeting for Patient-Focused Drug Development on Chronic Pain, click here to register.
8. Upcoming Events and Webinars, see details below.
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.
1. Dr. Selby: Patient-Centered Care Requires Breaking Old Traditions
PCORI Executive Director Joe Selby penned an op-ed in the Houston Chronicle encouraging more shared decision making between patients and physicians. “To support bridging care between the clinic and the community, PCORI funded a study in Harris County investigating whether it’s more effective for asthma patients to learn how to manage their disease from doctors at their clinics or from community health workers visiting their homes.Patient-centered care can be achieved through shared decision making and breaking down the traditional barriers between clinical practice and community health. The Dell Medical School’s efforts to train the next generation of doctors to conduct research and practice medicine in the community shows the horizon is bright for patient-centered care, and we are pleased to support such efforts in Texas.” Click here to read the op-ed
2. Global Healthy Living Foundation to Present at the VA Medical Device Registry Summit
The Global Health Living Foundation (GHLF) announced that it will be presenting at the Department of Veteran Affairs Medical Device Registry Summit. “Christine Stake, PhD, MA, a volunteer patient advocate for GHLF and a Patient Governor of the ArthritisPower™ Patient Research Registry will provide a patient perspective to Summit participants. She will highlight the vital role medical device registries can play in alerting patient communities about safety recalls, identifying the brand and serial number of individual patients’ medical devices, tracking and comparing device outcomes, and linking to other relevant data such as patient-reported outcomes.” Click here to read the press release.
3. Briefing — Endometriosis: Erasing Stigma, Improving Patient Care
The Society for Women’s Health Research (SWHR) is holding a briefing on Capitol Hill on June 29 to discuss eliminating stigma and improving patient care for Endometriosis patients. “Join the Society for Women's Health Research (SWHR) for an expert panel discussion about the significant social and economic burden of endometriosis on women, families, and society. This chronic, painful disease affects 10% of reproductive-age women, but its cause remains unknown and there is no cure. This briefing will address the current state of endometriosis research, as well as policy considerations affecting a woman’s diagnosis, treatment, and access to care.” Click here to RSVP.
4. Request for Comment: AHRQ Library of Patient-Centered Outcomes Research Resources
AHRQ is seeking feedback from researchers, clinicians, policymakers, consumers, and others on its comprehensive Web-based Library of Patient-Centered Outcomes Research (PCOR) resources. “Feedback will be used to assess and potentially revise the layout, design, and content of the library of resources. The library, developed through investments by public, private, nonprofit, and academic organizations, includes PCOR findings and evidence-based tools that have appeared in the published literature, as well as studies and projects in progress. As outlined in a recent Federal Register notice, AHRQ seeks input on how well the library of PCOR resources and its materials meet the needs of users.” Click here for details. Deadline: June 29, 2018.
5. PCORI Board of Governors Meeting: April 30, 2018
The PCORI Board of Governors held an in-person meeting on April 30, 2018. During the meeting, patient representatives had an opportunity to provide feedback directly to the Board of Governors related to their experiences with PCORI-funded research. Beginning on page 94, Bari Talente from the National Multiple Sclerosis Society explained PCORI’s deep understanding of the MS community and the outcomes that matter most to MS patients, and advocated for increased opportunities at PCORI to explore some more innovative approaches to comparative effectiveness, innovative trial design, and alternative trial design. On page 104, Sohini Chowdhury with the Michael J. Fox Foundation discussed two projects with PCORI, and explained their positive interactions and partnership with PCORI staff to improve clinician research networks with patients, as well as the challenges posed by administrative costs. During the meeting, the Board approved several new slates of research funding. Click here to view the transcript.
6. Patient EngagementHIT: AHA Launches Strategy for Patient-Centered Care for Aging Patients
In an article for Patient EngagementHIT, Sara Health reports on a new strategy from the American Hospital Association that drives patient-centered care for treating aging patients. “A focus on these patients is increasingly important as the nation sees its older patient population grow. More than 46 million Americans are over age 65, with that number expected to reach 98 million by 2060, AHA reported. Eighty percent of this population has at least one chronic illness, and 77 percent has at least two chronic illnesses. Those issues, as well as other lifestyle challenges associated with older age, make it difficult for these patients to interact with their health systems and achieve patient wellness. Transitions of care sites, poor care coordination, and conflicting priorities between patients, providers, and family caregivers, are all industry factors that limit patient ability to connect with quality healthcare.” Click here to read the article.
7. FDA Meeting for Patient-Focused Drug Development on Chronic Pain
The FDA is hosting a public meeting on Patient-Focused Drug Development for Chronic Pain on July 9. “FDA is interested in hearing patients’ perspectives on chronic pain, views on treatment approaches, and challenges or barriers to accessing treatments for chronic pain. FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), antidepressants; other medications; and non-pharmacologic interventions or therapies. The questions that will be asked of patients and patient representatives at the meeting are listed below, organized by topic. For each topic, a brief initial patient panel discussion will begin the dialogue. This will be followed by a facilitated discussion inviting comments from other patients and patient representatives in the audience. Webcast participants will also have an opportunity to provide input through webcast comments.” Click here to register.
8. Upcoming Events and Webinars
Medication-Assisted Treatment (MAT) Delivery for Pregnant Women with Substance Use Disorders Involving Prescription Opioids and/or Heroin (Cycle 2 2018) Applicant Town Hall
June 11, 2018
Click here for details
Improving Methods for Conducting Patient-Centered Outcomes Research (Cycle 2 2018) Applicant Town Hall
June 12, 2018
Click here for details
Overcoming Inequities in the Treatment of Mental Illness: The Role of Patient-Centered Research
June 13, 2018
Click here for details
Psychosocial Interventions with Office-Based Opioid Treatment for Opioid Use Disorder PFA (Cycle 2 2018) Applicant Town Hall
June 13, 2018
Click here for details
Broad PFA Applicant Town Hall -- Cycle 2 2018
June 14, 2018
Click here for details
Board of Governors Meeting: June 19, 2018
June 19, 2018
Click here for details
NPC @ AcademyHealth 2018 Annual Research Meeting
June 24-26, 2018
Click here for details.
DIA 2018 Global Annual Meeting
June 24-28, 2018
Click here for details.
Webinar: Barriers to Paying for Value
June 26, 2018
Click here for details
Putting Patients at the Center of Research: Opportunities and Challenges for Ethical and Regulatory Oversight
June 29, 2018
Click here for details
NPC @ MedCity CONVERGE
July 11-12, 2018
Click here for details.
Examining the Impact of Real-World Evidence on Medical Development: Application
July 17, 2018
Click here for details.
9. Medical Journal Articles
Patient Similarity for Precision Medicine: A Systematic Review, click here to view.
Multi-Stakeholder Engagement in Health Services Research, click here to view.
Care Transitions From Patient and Caregiver Perspectives, click here to view.
Incorporating Quantitative Patient Preference Data into Healthcare Decision Making Processes: Is HTA Falling Behind? Click here to view.
A Framework for Identifying Treatment-Covariate Interactions in Individual Participant Data Network Meta-Analysis, click here to view.
Nursing Research, CER, PICO and PCORI, click here to view.
Comment & Response: Measures of the Burden of Medical Expenses, click here to view.
A New Framework for Patient Engagement in Cancer Clinical Trials Cooperative Group Studies, click here to view.
Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research, click here to view.
Missing Data in Trial-Based Cost-Effectiveness Analysis: An Incomplete Journey, click here to view.
Effectiveness and Safety of Direct Oral Anticoagulants and Warfarin, Stratified by Stroke Risk in Patients with Atrial Fibrillation, click here to view.
Patient-Centered Recruitment and Retention for a Randomized Controlled Study, click here to view.
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.
10. AHRQ Effective Program Updates
Collaboration Is Key to Accelerating Diagnostics Access to Optimize Benefits of Precision Medicines, click here to view.
Registries for Evaluating Patient Outcomes: A User’s Guide Call for Case Examples, click here to view.
Telehealth for Acute and Chronic Care Consultations, click here to view.
Library of Patient-Centered Outcomes Research Resources, click here to view.
Mobile Health Applications for Self-Management of Diabetes, click here to view.
Role of Immunotherapy in the Treatment of Asthma, click here to view.
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.
PCORI Executive Director Joe Selby penned an op-ed in the Houston Chronicle encouraging more shared decision making between patients and physicians. “To support bridging care between the clinic and the community, PCORI funded a study in Harris County investigating whether it’s more effective for asthma patients to learn how to manage their disease from doctors at their clinics or from community health workers visiting their homes.Patient-centered care can be achieved through shared decision making and breaking down the traditional barriers between clinical practice and community health. The Dell Medical School’s efforts to train the next generation of doctors to conduct research and practice medicine in the community shows the horizon is bright for patient-centered care, and we are pleased to support such efforts in Texas.” Click here to read the op-ed
2. Global Healthy Living Foundation to Present at the VA Medical Device Registry Summit
The Global Health Living Foundation (GHLF) announced that it will be presenting at the Department of Veteran Affairs Medical Device Registry Summit. “Christine Stake, PhD, MA, a volunteer patient advocate for GHLF and a Patient Governor of the ArthritisPower™ Patient Research Registry will provide a patient perspective to Summit participants. She will highlight the vital role medical device registries can play in alerting patient communities about safety recalls, identifying the brand and serial number of individual patients’ medical devices, tracking and comparing device outcomes, and linking to other relevant data such as patient-reported outcomes.” Click here to read the press release.
3. Briefing — Endometriosis: Erasing Stigma, Improving Patient Care
The Society for Women’s Health Research (SWHR) is holding a briefing on Capitol Hill on June 29 to discuss eliminating stigma and improving patient care for Endometriosis patients. “Join the Society for Women's Health Research (SWHR) for an expert panel discussion about the significant social and economic burden of endometriosis on women, families, and society. This chronic, painful disease affects 10% of reproductive-age women, but its cause remains unknown and there is no cure. This briefing will address the current state of endometriosis research, as well as policy considerations affecting a woman’s diagnosis, treatment, and access to care.” Click here to RSVP.
4. Request for Comment: AHRQ Library of Patient-Centered Outcomes Research Resources
AHRQ is seeking feedback from researchers, clinicians, policymakers, consumers, and others on its comprehensive Web-based Library of Patient-Centered Outcomes Research (PCOR) resources. “Feedback will be used to assess and potentially revise the layout, design, and content of the library of resources. The library, developed through investments by public, private, nonprofit, and academic organizations, includes PCOR findings and evidence-based tools that have appeared in the published literature, as well as studies and projects in progress. As outlined in a recent Federal Register notice, AHRQ seeks input on how well the library of PCOR resources and its materials meet the needs of users.” Click here for details. Deadline: June 29, 2018.
5. PCORI Board of Governors Meeting: April 30, 2018
The PCORI Board of Governors held an in-person meeting on April 30, 2018. During the meeting, patient representatives had an opportunity to provide feedback directly to the Board of Governors related to their experiences with PCORI-funded research. Beginning on page 94, Bari Talente from the National Multiple Sclerosis Society explained PCORI’s deep understanding of the MS community and the outcomes that matter most to MS patients, and advocated for increased opportunities at PCORI to explore some more innovative approaches to comparative effectiveness, innovative trial design, and alternative trial design. On page 104, Sohini Chowdhury with the Michael J. Fox Foundation discussed two projects with PCORI, and explained their positive interactions and partnership with PCORI staff to improve clinician research networks with patients, as well as the challenges posed by administrative costs. During the meeting, the Board approved several new slates of research funding. Click here to view the transcript.
6. Patient EngagementHIT: AHA Launches Strategy for Patient-Centered Care for Aging Patients
In an article for Patient EngagementHIT, Sara Health reports on a new strategy from the American Hospital Association that drives patient-centered care for treating aging patients. “A focus on these patients is increasingly important as the nation sees its older patient population grow. More than 46 million Americans are over age 65, with that number expected to reach 98 million by 2060, AHA reported. Eighty percent of this population has at least one chronic illness, and 77 percent has at least two chronic illnesses. Those issues, as well as other lifestyle challenges associated with older age, make it difficult for these patients to interact with their health systems and achieve patient wellness. Transitions of care sites, poor care coordination, and conflicting priorities between patients, providers, and family caregivers, are all industry factors that limit patient ability to connect with quality healthcare.” Click here to read the article.
7. FDA Meeting for Patient-Focused Drug Development on Chronic Pain
The FDA is hosting a public meeting on Patient-Focused Drug Development for Chronic Pain on July 9. “FDA is interested in hearing patients’ perspectives on chronic pain, views on treatment approaches, and challenges or barriers to accessing treatments for chronic pain. FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), antidepressants; other medications; and non-pharmacologic interventions or therapies. The questions that will be asked of patients and patient representatives at the meeting are listed below, organized by topic. For each topic, a brief initial patient panel discussion will begin the dialogue. This will be followed by a facilitated discussion inviting comments from other patients and patient representatives in the audience. Webcast participants will also have an opportunity to provide input through webcast comments.” Click here to register.
8. Upcoming Events and Webinars
Medication-Assisted Treatment (MAT) Delivery for Pregnant Women with Substance Use Disorders Involving Prescription Opioids and/or Heroin (Cycle 2 2018) Applicant Town Hall
June 11, 2018
Click here for details
Improving Methods for Conducting Patient-Centered Outcomes Research (Cycle 2 2018) Applicant Town Hall
June 12, 2018
Click here for details
Overcoming Inequities in the Treatment of Mental Illness: The Role of Patient-Centered Research
June 13, 2018
Click here for details
Psychosocial Interventions with Office-Based Opioid Treatment for Opioid Use Disorder PFA (Cycle 2 2018) Applicant Town Hall
June 13, 2018
Click here for details
Broad PFA Applicant Town Hall -- Cycle 2 2018
June 14, 2018
Click here for details
Board of Governors Meeting: June 19, 2018
June 19, 2018
Click here for details
NPC @ AcademyHealth 2018 Annual Research Meeting
June 24-26, 2018
Click here for details.
DIA 2018 Global Annual Meeting
June 24-28, 2018
Click here for details.
Webinar: Barriers to Paying for Value
June 26, 2018
Click here for details
Putting Patients at the Center of Research: Opportunities and Challenges for Ethical and Regulatory Oversight
June 29, 2018
Click here for details
NPC @ MedCity CONVERGE
July 11-12, 2018
Click here for details.
Examining the Impact of Real-World Evidence on Medical Development: Application
July 17, 2018
Click here for details.
9. Medical Journal Articles
Patient Similarity for Precision Medicine: A Systematic Review, click here to view.
Multi-Stakeholder Engagement in Health Services Research, click here to view.
Care Transitions From Patient and Caregiver Perspectives, click here to view.
Incorporating Quantitative Patient Preference Data into Healthcare Decision Making Processes: Is HTA Falling Behind? Click here to view.
A Framework for Identifying Treatment-Covariate Interactions in Individual Participant Data Network Meta-Analysis, click here to view.
Nursing Research, CER, PICO and PCORI, click here to view.
Comment & Response: Measures of the Burden of Medical Expenses, click here to view.
A New Framework for Patient Engagement in Cancer Clinical Trials Cooperative Group Studies, click here to view.
Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research, click here to view.
Missing Data in Trial-Based Cost-Effectiveness Analysis: An Incomplete Journey, click here to view.
Effectiveness and Safety of Direct Oral Anticoagulants and Warfarin, Stratified by Stroke Risk in Patients with Atrial Fibrillation, click here to view.
Patient-Centered Recruitment and Retention for a Randomized Controlled Study, click here to view.
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.
10. AHRQ Effective Program Updates
Collaboration Is Key to Accelerating Diagnostics Access to Optimize Benefits of Precision Medicines, click here to view.
Registries for Evaluating Patient Outcomes: A User’s Guide Call for Case Examples, click here to view.
Telehealth for Acute and Chronic Care Consultations, click here to view.
Library of Patient-Centered Outcomes Research Resources, click here to view.
Mobile Health Applications for Self-Management of Diabetes, click here to view.
Role of Immunotherapy in the Treatment of Asthma, click here to view.
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.
