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The PIPC Blog

PIPC Weekly Update: February 20, 2018

2/20/2018

 
Picture
In This Week’s Issue:
 
1. Chairman’s Corner: Changing the Culture of How We Pay for Care, click here to read the blog. 
2. AJMC Video: Improving Patient Understanding and Promoting High Value Care, click here to watch the video.
3. FDA Public Meeting: Evaluating Inclusion and Exclusion Criteria in Clinical Trials, click here to register.  
4. PCORI Video: One Size Does Not Fit All, click here to watch the video.
5. Patient Engagement HIT: AMIA Outlines Data Use Guideline for Patient-Centered Care, PGHD, click here to read the article.
6. Kaiser Health News: Doctors Learn How To Talk To Patients About Dying, 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. Chairman’s Corner: Changing the Culture of How We Pay for Care
 
In his latest Chairman’s Corner Blog, PIPC Chairman Tony Coelho lauds the progress that has been made in the patient-centered care movement and outlines steps to ensure that the patient voice remains at the center of the healthcare debate. “I have seen tremendous progress in the patient-centeredness movement, particularly in changing the culture of medical research.  Yet, our leaders should know that we still have a long way to go to give patients, people with disabilities, veterans and caregivers a voice in how we deliver care that patients value.  They deserve a seat at the table in any discussion of health care policy, as well as meaningful opportunities to voice their unique and real experiences.”
 
“While progress has been made to advance a culture of care that is tailored to the individual, more must be done to advance reforms that facilitate access to care that patients value.  People will face substantial uncertainty in the next year accessing health insurance, which presents opportunities to do better as well as challenges. How policymakers address three critical issues will determine whether we continue progress toward care centered around patients and people with disabilities.” Click here to read the blog. 
 
2. AJMC Video: Improving Patient Understanding and Promoting High Value Care
 
Jason Harris, associate director of policy and programs at National Health Council, talks about promoting high-value, patient-centric care that reduces costs in an AJMCtv video. “We’re doing a number of things. We have a value initiative that we’ve launched in the last two years, and much of that is around trying to understand how patients define value.” Click here to watch the video. 
 
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. PCORI Video: One Size Does Not Fit All
 
In a new PCORI video, Patient advocate David White notes that shared decision-making tools need to work for a variety of different learning styles, and therefore should be tested before they are put into practice. “The tools that are in use today that make shared-decision making easier are very helpful depending on the patient. Different types of tools work better with different types of patients.” Click here to watch the video. 
 
5. Patient Engagement HIT: AMIA Outlines Data Use Guideline for Patient-Centered Care, PGHD 
 
In Patient Engagement HIT, Sara Heath writes that better data governance will streamline the multiple data sources emerging in patient-centered care. “...‘We are at or very close to the tipping point where patients and health care professionals become co-producers in the healthcare data ecosystem,’ explained API17 Vice Chair Jeremy Warner, MD, MS, in a statement. ‘This is the time to lay out clear and crisp policies to ensure that data ownership is clearly delineated, that data production is equitable, and that research can benefit from motivated and technology-enabled participants.’...Additionally, industry professionals must create an environment in which patients are empowered to create their own PGHD. Stakeholders such as [PCORI], CMS, and [NIH] can be in charge of initiatives that activate patients in their own care at a high level. Click here to read the article.
 
6. Kaiser Health News: Doctors Learn How To Talk To Patients About Dying
 
Melissa Bailey reports on the training of primary care doctors in how to talk to patients with serious illnesses about their goals and values in Kaiser Health News. “The doctors are using a script based on the Serious Illness Conversation Guide, first created by Drs. Atul Gawande and Susan Block at Ariadne Labs. Since its inception in Boston in 2012, the guide has been used to train over 6,500 clinicians worldwide, said Dr. Rachelle Bernacki, associate director of the Serious Illness Care Program at Ariadne Labs. At Mass General, Dr. Juliet Jacobsen, a palliative care physician, serves as medical director for the Continuum Project, a large-scale effort to quickly train clinicians to have these conversations, document them and share what they learn with one another. The project ramped up in January with the first session in a series that aims to reach 250 primary care providers at the hospital.” Click here to read the article.
 
7. Upcoming Events and Webinars 
 
Doing the Right Thing... Right: Evidence Informing Clinical Decision-Making
February 22, 2018
Click here for details.
 
PCORI Board of Governors Meeting
February 27, 2018
Click here for details.
 
PCORnet Best Practice Sharing Session – Lessons Learned in ADAPTABLE: Recruitment, Retention, and Endpoint Ascertainment
March 7, 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.
 
DIA 2018 Global Annual Meeting
June 24-28, 2018
Click here for details.
 
8. Medical Journal Articles
 
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. 
 
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
 
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. 

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