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  • About
    • Mission and Priorities
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    • Steering Committee
    • PIPC Member List
    • Contact
  • The Issues
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The PIPC Blog

PIPC Weekly Update - July 20, 2015

7/20/2015

 
In This Week’s Issue:
1. PIPC Survey Results: Patients Value Choice in Treatments, Access to Different Options, click here to view a summary.
2. National Health Council Releases Report on Patient-Centeredness in State Exchanges, click here to view the report. 
3. PCORI Releases Framework on Compensation for Patients and Caregivers Engaged in Research, click here to view the document. 
4. National Patient Advocate Foundation Releases White Paper on Clinical Pathways, click here to view the white paper.
5. NYT: The Error in ‘There’s Nothing More We Can Do’, click here to view.
6. Science Magazine: Supporters Defend Threatened Health Research Agency, click here to view the article. 
7. Pink Sheet: ASCO Value Framework Could Inform Clinical Pathways, Payers Say, click here to view the article (subscription only).
1. PIPC Survey Results: Patients Value Choice in Treatments, Access to Different Options
​

The Partnership to Improve Patient Care (PIPC) has released a public opinion poll regarding healthcare in America, indicating that Americans are interested in actively participating in treatment decision making, and want the government to have a limited say in what treatments they can access.  The survey, which polled 1,500 registered voters, updates a survey originally conducted in 2013.

Among the findings of the poll, high-quality healthcare remains a priority for patients, but they also want to discuss a full range of topics with their providers, including potential risks and benefits of treatment, and the cost of treatment to them.  Consistent with PIPC surveys from previous years, the poll reveals continued public support for comparative effectiveness research (CER) conducted by the Patient-Centered Outcomes Research Institute (PCORI), and use of this type of research to inform physician-patient decision-making.

In releasing the poll, PIPC Chairman Tony Coelho stated, "These findings reinforce that if policymakers want to promote value to the patient, then they should create new payment and delivery models that help doctors and patients make informed decisions from the range of treatment options, rather than creating incentives to limit treatment options or impose “one-size-fits-all” treatment pathways based on what works on the average patient.  Most of us are not average."   

Click here to view a summary of the poll results.

2. National Health Council Releases Report on Patient-Centeredness in State Exchanges
A new report released by the National Health Council (NHC) shows that while all states have taken action to make their exchanges more patient centered, none of them met all 15 criteria identified by the NHC.  “NHC created state-specific progress reports to assess the patient-centeredness of health insurance markets across states. These reports show the variability across insurance marketplaces and identify states where changes could improve access to coverage and care for patients. These reports also can identify leading states that set best practices for patient-friendly requirements… The goal of these reports is to encourage states to implement a range of reforms in the key areas that will have the most benefit to patients.”  Click here to view the report. 

3. PCORI Releases Framework on Compensation for Patients and Caregivers Engaged in Research

Last week, the Patient-Centered Outcomes Research Institute (PCORI) released a Framework on Compensation, created by the Advisory Panel on Patient Engagement in collaboration with PCORI staff.  “The framework was developed in response to repeated calls for clarity about how and when to compensate patient partners serving on research teams.  Members of PCORI’s engagement team and of the Advisory Panel on Patient Engagement searched extensively for existing payment or compensation models, but found nothing that squarely fit our purposes.  Many were focused on payment for research participants rather than research partners.  Others were adaptations from fields outside of research and did not match our needs.  Ultimately, we decided that the occasion called for the construction of a new framework and after much dialogue and hard work, we are happy to provide this tool for our applicants and other members of the PCOR community.”  Click here to view the document. 

As PCORI’s patient engagement officers Susan Sheridan and Suzanne Schrandt explained on The PCORI Blog, “the new document provides a framework for thinking about financial compensation of research partners who are patients, caregivers, or representatives of patient or caregiver organizations. We expect that any research proposal submitted to PCORI will include a plan and related budget for compensating such partners.” Click here to view the article. 

4. National Patient Advocate Foundation Releases White Paper on Clinical Pathways

The National Patient Advocate Foundation (NPAF) last week released a new white paper entitled, Clinical Pathways: barrier or benefit to patient Access and personalized medicine? As highlighted in the overview, “this paper provides normative insights into the purpose of clinical pathways and explains how they are evolving in response to various dynamics in the healthcare arena.  A set of criteria are delineated for defining the fundamental components of a pathway to help reduce variability in the design and implementation of such programs.  It is our contention that pathways should be held to the same transparency standards as clinical guidelines and we provide a list of additional recommendations to guide the future of clinical pathways so they are aligned with broader efforts to create a healthcare paradigm grounded in shared-decision making and personalized care. The information and recommendations conveyed in this paper are meant to be broadly applicable as a reference guide.  However, we often focus on oncology as a means by which to illustrate the challenges associated with certain approaches to clinical pathways that may conflict with advancements in patient engagement and precision medicine.”  Click here to view the white paper.

5. NYT: The Error in ‘There’s Nothing More We Can Do’

An opinion in the New York Times concludes that, "The only time doctors are left with 'nothing more we can do' is when we fail to ask.”  The physician and author of the opinion states, "Yet here’s the reality: More can always be done. More important, patients know exactly the ‘more' that they want. The real question is: Why don’t we ask? 'If I had a magic wand, what is it you would wish for today?' This is a question I ask of my patients receiving hospice and palliative care.  No one has ever asked that I rid them of their disease. Rather, I have been met with immediate replies of 'make my anxiety go away' or “let me travel to see my family' and 'let me go home and sit in my garden.’” Click here to view the opinion.

6. Science Magazine: Supporters Defend Threatened Health Research Agency

As reported last week in Science Magazine, “Health advocacy groups are scrambling to save a U.S. research agency on the chopping block in Congress. Last month a House of Representatives panel approved a spending bill that would give the National Institutes of Health (NIH) a $1.1 billion raise next year, with some of the new money coming from zeroing out funding for the Agency for Healthcare Research and Quality (AHRQ), which funds studies to improve health care delivery… Those who want to trim or eliminate AHRQ argue that its work overlaps with NIH research. [Some critics] say AHRQ overlaps with the Patient-Centered Outcomes Research Institute (PCORI), a nonprofit supported by a trust fund that was created by the 2010 Affordable Care Act. PCORI now spends about $500 million a year on studies looking at which of two treatments works better, an area known as comparative effectiveness research.”

“[But] PCORI differs from AHRQ, [Lisa Simpson, president and CEO of AcademyHealth] adds, because its mission is specifically to compare treatments, such as two different doses of aspirin to prevent heart attacks. AHRQ had funded comparative effectiveness research before PCORI came along, she says, but it no longer does...In addition, AHRQ funds annual reports on the quality of U.S. health care, supports training of health services researchers, and works to disseminate research findings on best treatments. Those activities make it stand out from the pack, says Ann Bonham, chief scientific officer of the Association of American Medical Colleges in Washington, D.C.”  Click here to view the article. 

7. Pink Sheet: ASCO Value Framework Could Inform Clinical Pathways, Payers Say

Cathy Kelly reported for The Pink Sheet last week that the American Society of Clinical Oncology’s (ASCO’s) value framework “will certainly spur [manufacturers] to need to develop more evidence regarding product differentiators,’ [Anthem Inc. Staff VP of Clinical Strategy Jennifer Malin] added. ‘In a number of circumstances we've seen ‘me-too’ products come out that are at a higher cost than the originator product, and if you really had a true market, that shouldn't happen unless they were providing additional value.’” Clickhere to view the article (subscription only). 

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