In This Week’s Issue:
1. The Data Mine: Tufts University Study Highlights Failure of Cost Effectiveness Analysis to Account for Variability Among Patients, click here to read the blog.
2. PCORI Seeking New Patient Engagement Advisory Panel Members, click here to apply
3. FDA Public Meeting: Evaluating Inclusion and Exclusion Criteria in Clinical Trials, click here to register.
4. CancerCare Report: Study Highlights Barriers to Aligning Treatment Strategies with Patient Priorities, click here to read the report.
5. HealthIT Analytics: CMS Announces Patient-Centered Data Sharing Initiative, click here to read the article.
6. Healthcare Informatics: ONC Execs Double Down on Patient-Centered Healthcare, Believe it’s “Nonsense” that Patients Aren’t Ready, click here to read the article.
7. Upcoming Events and Webinars, see details below.
8. Medical Journal Articles, see details below.
9. AHRQ Effective Program Updates, see details below.
1. The Data Mine: Tufts University Study Highlights Failure of Cost Effectiveness Analysis to Account for Variability Among Patients, click here to read the blog.
2. PCORI Seeking New Patient Engagement Advisory Panel Members, click here to apply
3. FDA Public Meeting: Evaluating Inclusion and Exclusion Criteria in Clinical Trials, click here to register.
4. CancerCare Report: Study Highlights Barriers to Aligning Treatment Strategies with Patient Priorities, click here to read the report.
5. HealthIT Analytics: CMS Announces Patient-Centered Data Sharing Initiative, click here to read the article.
6. Healthcare Informatics: ONC Execs Double Down on Patient-Centered Healthcare, Believe it’s “Nonsense” that Patients Aren’t Ready, click here to read the article.
7. Upcoming Events and Webinars, see details below.
8. Medical Journal Articles, see details below.
9. AHRQ Effective Program Updates, see details below.
1. The Data Mine: Tufts University Study Highlights Failure of Cost Effectiveness Analysis to Account for Variability Among Patients
PIPC’s newest blog series, The Data Mine, covers a new study confirming some of stakeholders’ most significant concerns about the utilization of cost-effectiveness research. “Results show that less than one quarter of the cost effectiveness studies reviewed (38 of the 200, or 19%) included the type of analysis that would recognize differences in even the most basic patient characteristics, such as age. Even among the subgroup of studies that did examine more specific patient groups, the level of analysis falls far short of what is optimal for helping patients make decisions about their treatment. Most of the 38 studies focused on only one difference among patient subgroups – age. Yet we know that gender, race, baseline risk, and numerous other factors influence treatment outcomes.” Click here to read the blog.
2. 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.
3. 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.
4. CancerCare Report: Study Highlights Barriers to Aligning Treatment Strategies with Patient Priorities
A CancerCare study highlights key barriers that oncology providers face when engaging patients in the treatment decision-making process. “Titled ‘Decision Making at the Point of Care: Voices of Oncology Providers,’ this study demonstrates that while many oncology providers have a desire to learn more about their patients, both personally and clinically, there are significant barriers to ensuring that patient priorities are part of treatment decision making, including a lack of formal procedures, interoperability of data sources, and electronic medical record limitations. This paper was produced as part of CancerCare’s Patient Values Initiative (PVI), a multi-pronged effort aimed at reframing the national healthcare policy framework to ensure that patient engagement in treatment decision-making becomes the true standard of care. The findings build on the first PVI white paper, which is focused on patient priorities and preferences during treatment planning.” Click here to read the report.
5. HealthIT Analytics: CMS Announces Patient-Centered Data Sharing Initiative
Jennifer Bresnick reports on a new data sharing initiative aimed at improving patient control over their own health data in HealthIT Analytics. “MS Administrator Seema Verma has announced a new initiative to ensure that patients remain at the center of the healthcare system as providers and payers continue to transition to value-based care. The MyHealthEData initiative intends to improve the ability of patients to access, collect, and share their health data in a unified, interoperable manner. Giving patients more control over their personal data will help to create more comprehensive medical records for better decision-making, Verma said at HIMSS18 this week. ‘I’ve always been struck by how seldom the patient is mentioned in discussions around value-based care,’ she said to a full ballroom of attendees. ‘Let me be clear, we will not achieve value-based care until we put the patient at the center of our healthcare system. Until patients can make their own decisions based on quality and value health care costs will continue to grow at an unsustainable rate.’” Click here to read the article.
6. Healthcare Informatics: ONC Execs Double Down on Patient-Centered Healthcare, Believe it’s “Nonsense” that Patients Aren’t Ready
In an article for Healthcare-Informatics.com, Rajiv Leventhal reports on comments from offoicials at the Office of the National Coordinator for Health IT (ONC) about the importance of patient empowerment. “John Fleming, M.D., deputy assistant secretary for health technology reform, was also part of the media briefing, and he touched on the issue of patient control as well. He reflected back on his years as a practicing physician, noting, ‘I have a very longitude perspective of patient and provider attitudes about their records, and for many years well into the 1980s, patients completely relied on doctors and trusted us without reservation. And I actually grew uncomfortable with that since doctors [make mistakes, too]. It’s obvious that patients and providers should become a team, and the only way for that to happen is to share data.’” Click here to read the article.
7. Upcoming Events and Webinars
AMIA 2018 Informatics Summit
March 12-15, 2018
Click here for details.
Preventing and Treating America's Number One Killer: The Need for Evidence-Based Strategies in Cardiovascular Disease
March 14, 2018
Click here for details.
Webinar: Getting Real About Real World Evidence: Practical Next Steps for Drug and Device Manufacturers
March 15, 2018
Click here for details.
PCORI Board of Governors Meeting
March 20, 2018
Click here for details.
Advisory Panel on Rare Disease Spring 2018 Meeting
March 21, 2018
Click here for details.
PCORI Online: Pipeline to Proposal Awardee Webinar
March 22, 2018
Click here for details.
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 Patient Engagement Spring 2018 Meeting
April 19-20, 2018
Click here for details.
DIA 2018 Global Annual Meeting
June 24-28, 2018
Click here for details.
8. Medical Journal Articles
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.
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.
9. AHRQ Effective Program Updates
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 newest blog series, The Data Mine, covers a new study confirming some of stakeholders’ most significant concerns about the utilization of cost-effectiveness research. “Results show that less than one quarter of the cost effectiveness studies reviewed (38 of the 200, or 19%) included the type of analysis that would recognize differences in even the most basic patient characteristics, such as age. Even among the subgroup of studies that did examine more specific patient groups, the level of analysis falls far short of what is optimal for helping patients make decisions about their treatment. Most of the 38 studies focused on only one difference among patient subgroups – age. Yet we know that gender, race, baseline risk, and numerous other factors influence treatment outcomes.” Click here to read the blog.
2. 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.
3. 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.
4. CancerCare Report: Study Highlights Barriers to Aligning Treatment Strategies with Patient Priorities
A CancerCare study highlights key barriers that oncology providers face when engaging patients in the treatment decision-making process. “Titled ‘Decision Making at the Point of Care: Voices of Oncology Providers,’ this study demonstrates that while many oncology providers have a desire to learn more about their patients, both personally and clinically, there are significant barriers to ensuring that patient priorities are part of treatment decision making, including a lack of formal procedures, interoperability of data sources, and electronic medical record limitations. This paper was produced as part of CancerCare’s Patient Values Initiative (PVI), a multi-pronged effort aimed at reframing the national healthcare policy framework to ensure that patient engagement in treatment decision-making becomes the true standard of care. The findings build on the first PVI white paper, which is focused on patient priorities and preferences during treatment planning.” Click here to read the report.
5. HealthIT Analytics: CMS Announces Patient-Centered Data Sharing Initiative
Jennifer Bresnick reports on a new data sharing initiative aimed at improving patient control over their own health data in HealthIT Analytics. “MS Administrator Seema Verma has announced a new initiative to ensure that patients remain at the center of the healthcare system as providers and payers continue to transition to value-based care. The MyHealthEData initiative intends to improve the ability of patients to access, collect, and share their health data in a unified, interoperable manner. Giving patients more control over their personal data will help to create more comprehensive medical records for better decision-making, Verma said at HIMSS18 this week. ‘I’ve always been struck by how seldom the patient is mentioned in discussions around value-based care,’ she said to a full ballroom of attendees. ‘Let me be clear, we will not achieve value-based care until we put the patient at the center of our healthcare system. Until patients can make their own decisions based on quality and value health care costs will continue to grow at an unsustainable rate.’” Click here to read the article.
6. Healthcare Informatics: ONC Execs Double Down on Patient-Centered Healthcare, Believe it’s “Nonsense” that Patients Aren’t Ready
In an article for Healthcare-Informatics.com, Rajiv Leventhal reports on comments from offoicials at the Office of the National Coordinator for Health IT (ONC) about the importance of patient empowerment. “John Fleming, M.D., deputy assistant secretary for health technology reform, was also part of the media briefing, and he touched on the issue of patient control as well. He reflected back on his years as a practicing physician, noting, ‘I have a very longitude perspective of patient and provider attitudes about their records, and for many years well into the 1980s, patients completely relied on doctors and trusted us without reservation. And I actually grew uncomfortable with that since doctors [make mistakes, too]. It’s obvious that patients and providers should become a team, and the only way for that to happen is to share data.’” Click here to read the article.
7. Upcoming Events and Webinars
AMIA 2018 Informatics Summit
March 12-15, 2018
Click here for details.
Preventing and Treating America's Number One Killer: The Need for Evidence-Based Strategies in Cardiovascular Disease
March 14, 2018
Click here for details.
Webinar: Getting Real About Real World Evidence: Practical Next Steps for Drug and Device Manufacturers
March 15, 2018
Click here for details.
PCORI Board of Governors Meeting
March 20, 2018
Click here for details.
Advisory Panel on Rare Disease Spring 2018 Meeting
March 21, 2018
Click here for details.
PCORI Online: Pipeline to Proposal Awardee Webinar
March 22, 2018
Click here for details.
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 Patient Engagement Spring 2018 Meeting
April 19-20, 2018
Click here for details.
DIA 2018 Global Annual Meeting
June 24-28, 2018
Click here for details.
8. Medical Journal Articles
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.
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.
9. AHRQ Effective Program Updates
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.