1. PIPC Forum TODAY! PIPC to release two new reports! Click here for details.
2. Avalere-FasterCures Patient-Perspective Value Framework Draft Released for Public Comment, click here to view the draft and here to submit input.
3. Sign and Share Petition to Give Patients and People Served by Health Systems a Voice in Healthcare, click here to view and sign the petition.
4. Applied Clinical Trials: FDA’s John Whyte Delves Deeper into Patient Centricity, click here to view the article.
5. NPR: Patients Increasingly Influence The Direction Of Medical Research, click here to view the article.
6. ICER Releases Draft Evidence Report on Treatments for Multiple Sclerosis, click here to view the report and here to view the press release.
7. Academy Health Blog: Explaining the Value of Data Sharing: Lessons Learned, click here to view the blog post.
8. Delaware Online: Obamacare Has Many More Provisions Worth Saving, click here to view the article.
9. Upcoming Events and Webinars, see details below.
10. Medical Journal Articles, see details below.
11. AHRQ Effective Program Updates, see details below.
As we make the transition to a value-based health care system, the importance of engagement with patients cannot be overstated. Yet we still face a pressing need for concrete actions and steps that can be taken to ensure patient voices are heard amidst the implementation of payment models seeking to achieve “value” in health care. Although the patient-centeredness movement has made significant strides over the last decade with the creation of the Patient-Centered Outcomes Research Institute (PCORI), the Food and Drug Administration’s (FDA) program for Patient-Focused Drug Development, and the Precision Medicine Initiative the patient-centeredness movement is at a crossroads, struggling whether to determine value of health care based on what is cost effective for the average patient or based on achieving outcomes that matter to individual patients and people with disabilities.
The 7th Annual PIPC Forum will highlight the ongoing efforts of organizations representing patients and people with disabilities to ensure all stakeholders are equipped with the tools they need to fully and meaningfully engage with patients and achieve value for the people served by health systems.
Additionally, PIPC will be releasing at the forum two new reports on Strategies to Value the Patients Perspective in Health Care, as well as on Advancing Patient-Centered Approaches To Value-Based Payment: A Roadmap For Increased Patient Engagement At CMMI, which will be available later today at www.pipcpatients.org.
Monday, December 5, 2016
12:00 p.m. – 2:00 p.m.
Lunch buffet begins at 11:30am
Reserve Officers Association
5th Floor Minuteman Ballroom
1 Constitution Ave NE, Washington, DC 20002
RSVP directly to firstname.lastname@example.org
2. Avalere-FasterCures Patient-Perspective Value Framework Draft Released for Public Input
The Avalere-FasterCures Patient-Perspective Value Framework (PPVF) is currently in draft form for public input. The Partnership to Improve Patient Care (PIPC) is a member of the multi-stakeholder Steering Committee led by Avalere Health and FasterCures working to develop a value framework that truly represents the patient perspective on the value of different health care options. Last week, PIPC released the draft Avalere-FasterCures Patient-Perspective Value Framework (PPVF) and would appreciate your taking a few minutes to share your thoughts. The deadline for feedback via this questionnaire is December 30th, 2016. Click here to view the draft and here to submit input.
3. Sign and Share Petition to Give Patients and People Served by Health Systems a Voice in Healthcare
Sign and share PIPC Chairman Tony Coelho’s recently launched petition calling on health care stakeholders to recognize patients and people served by health system’s movement for greater say in their own health care. “We urge both the media and politicians to take heed of what matters to us… because in the end, we are all patients,” Chairman Coelho writes.
Join the petition to all those who define your health care to say…
- We insist that on engaging patients, caregivers, and people living with incurable diseases or lifelong disabilities in health care decision-making.
- We want to be at the center of health care.
- We want policies to explicitly empower consumers, patients and providers.
- We want to know what decisions about our health are being made by the government.
- We want a health care system that rewards the outcomes that matter to us as patients and participants in this nation’s health system.
- We reject the notion that we should be bundled into one-size-fits-all care models, or valued against one-size-fits-all judgments of cost-effectiveness. Don’t tell us what we’re worth – ask us what we value.
- None of us is average. We are unique individuals with different genetics, characteristics, needs and preferences. Especially in this promising new age of personalized medicine, we are confounded by proposals in vital programs like Medicare that aim to eliminate, rather than empower, choice of treatments.
PIPC encourages every individual to sign and share the petition in order to increase its impact and raise awareness of the important issue. Click here to view and sign the petition.
4. Applied Clinical Trials: FDA’s John Whyte Delves Deeper into Patient Centricity
Recently published in Applied Clinical Trials, Dr. John Whyte, Director of Professional Affairs and Stakeholder Engagement at the Food and Drug Administration (FDA), shares some perspectives on patient centricity at eyeforpharma’s Patient Centered Clinical Trials conference. In the interview, Whyte delves deeper into the definition of patient centricity, and discusses some of the issues that not only the FDA, but also the industry as a whole are facing. In his interview Whyte notes, “We should not presume that we know what's most important to the patients without first asking them.” Click here to view the article.
5. NPR: Patients Increasingly Influence The Direction Of Medical Research
National Public Radio (NPR) Morning Addition highlights the fact that patients and their advocates are getting an ever-larger voice in how medical research is carried out, including that they participate in the design of experiments and have a greater say in what outcomes they care about most. Furthermore, NPR explains that the FDA has already demonstrated that it is paying more attention to what patients want. “Earlier this year, after hearing impassioned pleas from parents and their scientific allies, the agency temporarily approved a drug for Duchenne muscular dystrophy, even though the science in hand didn't provide proof positive that the drug was effective,” they write. Click here to view the article.
6. ICER Releases Draft Evidence Report on Treatments for Multiple Sclerosis
The Institute for Clinical and Economic Review (ICER) has released a Draft Evidence Report assessing the comparative clinical effectiveness and value of disease-modifying therapies for relapsing-remitting and primary-progressive multiple sclerosis. The report, as well as accompanying draft voting questions, will be open to public comment until December 21, 2016 at 5PM ET.
According to ICER, the Evidence Report, which will include value-based price benchmarks for the treatments under review, will be the subject of a public meeting of the California Technology Assessment Forum (CTAF) on February 16, 2017 in Oakland, CA. During the meeting, the independent CTAF Panel will vote on key questions raised in the report, and an expert policy roundtable will discuss recommendations to apply the evidence to policy and practice. Click here to view the report and here to view their press release.
7. Academy Health Blog: Explaining the Value of Data Sharing: Lessons Learned
A recent Academy Health Blog post emphasizes the need to engage patients and the community in order to achieve health improvements. “It is rapidly becoming best practice to engage patient and other perspectives early and often in health improvement initiatives,” the blog post states. “Such efforts can be critical in making the case for and communicating the value of data sharing. Many in our cohort found that they were able to successfully explain the value of partnering to share data when discussing improved health care outcomes for patients, specifically through the frame of better care coordination.” Click here to view the blog post.
8. Delaware Online: Obamacare Has Many More Provisions Worth Saving
An article in Delaware Online highlights a number of valuable parts to the Affordable Care Act (ACA) that are “worth saving” under the Trump administration. “The ACA has exerted significant influence on healthcare systems and clinical care providers through payment reforms, quality improvement initiatives, and innovations in health workforce policy and research priorities,” the article states. It goes on to highlight the Patient-Centered Outcomes Research Institute (PCORI) for promoting innovation in research critical to long-term improvements in healthcare quality and cost savings. Click here to view the article.
9. Upcoming Events and Webinars
Recommendations of the Second Panel on Cost-Effectiveness in Health and Medicine
December 7, 2016, 9:00AM - 4:30PM
Click here for details.
Beyond Value Frameworks: Defining the Value of Medical Innovation
December 13, 2016, 12:00pm-1:30pm ET
Click here for details.
PCORI Board of Governors Meeting
December 8, 2016, 8:00AM – 1:00pm, Amicus Therapeutics, Cranbury, NJ
Click here for details.
2017 National Health Policy Conference
January 30 - 31, 2017, Marriott, Marquis, Washington D.C.
Click here for details.
10. Medical Journal Articles
Comparative Effectiveness and Safety of Thalidomide and Lenalidomide in Patients with Multiple Myeloma in the United States of America: A Population-Based Cohort Study?, click here to view.
Bayesian Analysis of Heterogeneous Treatment Effects for Patient-Centered Outcomes Research, click here to view.
Comparative Effectiveness and Safety of Oral Anticoagulants for Atrial Fibrillation in Real-World Practice: A Population-Based Cohort Study Protocol, click here to view.
The Transparency of Published Health Technology Assessment-Based Recommendations on Pharmaceutical Reimbursement in Poland, click here to view.
Evidence-Based and Personalized Medicine. It's [AND] not [OR], click here to view.
Network Meta-Analyses Performed by Contracting Companies and Commissioned by Industry, click here to view.
Use of Big Data for Drug Development and for Public and Personal Health and Care, click here to view.
11. AHRQ Effective Program Updates
Management of Suspected Opioid Overdose with Naloxone Guidelines by Emergency Medical Services Personnel -- Research Protocol, click here to view.
Patient Safety in Ambulatory Settings -- Final Report, click here to view.
Strategies for Improving the Lives of Women Aged 40 and Above Living With HIV/AIDS -- Final Report, click here to view.