1. PIPC Provides Recommendations to Senate Finance Committee on Development of Chronic Care Legislation, click here to view the letter.
2. Forbes: We Must Return To Patient-Centered Care, Compensate Physicians For End Of Life Conversations, click here to view the article.
3. Wall Street Journal: Health-Data Donors Aim to Aid Science, click here to view the article.
4. KevinMD Blog: Patient Engagement Is in Search of a Definition, click here to view the blog post.
5. PCORI Blog: A Textbook Example of Patient-Driven Research, click here to view the blog post.
6. University of Maryland: CER and PCOR Summer Institute 2015, see details below
Recently, the Partnership to Improve Patient Care (PIPC) sent a letter to Senate Finance Committee Chairman Orrin Hatch (R-UT) and Ranking Member Ron Wyden (D-OR) to comment on the Finance Committee's work to address chronic diseases. PIPC outlined a series of observations and recommendations focused on improving patient outcomes and empowering Medicare patients to play a greater role in managing their health and meaningfully engaging with health care providers. Specific policy recommendations included in the letter are the establishment of formalized mechanisms to provide a voice for patients in the creation and testing of alternative payment models (APMs); the expansion of available quality measures and incentivizing their production in APMs; and the fostering of informed choices from the range of clinical care options. In addition to their specific policy proposals, PIPC also urges the Committee to convene patient organizations to contribute to chronic care legislation, noting that patients are the ultimate beneficiary of this vital work. Click here to view the letter.
2. Forbes: We Must Return To Patient-Centered Care, Compensate Physicians For End Of Life Conversations
A recent commentary in Forbes highlights the importance of patient-centered care. Former Senator, Dr. Bill Frist writes that “as a heart surgeon, I have seen countless instances where patients near the end of life undergo aggressive medical interventions in order to prolong the inevitable. Yet most people, when asked, say they would want to spend their final days at home, without pain, comfortable with family and friends, and not hooked up to multiple machines in the hospital. We simply must do better and help ensure that a patient receives the health care that they want near the end of their life… I’m encouraged to see that this important issue has reached the halls of Congress, where legislators in both the House and Senate are pursuing bipartisan ways to improve the care patients receive near the end of life. One policy option being considered is reimbursing providers for discussing treatment options and care preferences with patients and their families. I wholeheartedly support this idea, and there is an immediate opportunity to make it happen.” Click here to view the article.
3. Wall Street Journal: Health-Data Donors Aim to Aid Science
Melinda Beck reported last week in The Wall Street Journal, “One of the newest ways for people to use their medical information is offering it to researchers studying health problems that affect them or their loved ones. The concept started with rare diseases and is spreading fast to more common conditions like epilepsy and depression… To date, [PCORI] has funded 18 ‘patient-powered research networks’— drawing on registries where patients with specific conditions can sign up to participate. Patients can opt to share such information their diagnoses, symptoms, treatments, genetic tests and quality-of-life measures...Having access to such detailed information allows researchers to design different kinds of studies than they are able to conduct using anonymous data collected for other purposes, as many rely on now. The registries also give researchers an easy way to find patients willing to participate in clinical trials.” Click here to view the article.
4. KevinMD Blog: Patient Engagement Is in Search of a Definition
In a recent blog post on KevinMD.com, Richard Upton comments, “The current lack of a unified definition for patient engagement has already created significant confusion and dysfunctional initiatives due to the fact that a myriad of definitions referenced place a disproportionate degree of responsibility on the patient, while being tactical in their execution. This might help set a lucrative target for a commercially based agenda, but it does little to add clarity and direction for the strategic goals of patient engagement's intended purpose. The health care industry already has an overabundance of examples where the pursuit of market share has threatened patient care.” Click here to view the blog post.
5. PCORI Blog: A Textbook Example of Patient-Driven Research
As PCORI’s Executive Director Dr. Joe Selby recently commented on The PCORI Blog, “[The Immune Deficiency Foundation] has developed and makes available an electronic personal health record (ePHR) that is currently used by more than 1,600 patients... When an individual signs up for the ePHR, he or she also is invited to join PI Connect, one of the 18 Patient-Powered Research Networks (PPRNs) funded by PCORI as part of PCORnet, the National Patient-Centered Clinical Research Network. About two-thirds of the ePHR users accept this invitation, which lets them share their electronic data with researchers and other patients for the purposes of participating in research that they themselves help to plan and conduct.” Click here to view the blog post.
6. University of Maryland: CER and PCOR Summer Institute 2015
The first annual CER-PCOR Summer Institute brings a wide range of stakeholders together to broaden their knowledge on the burgeoning field of CER-PCOR. The five-day Institute is designed for researchers, clinicians, policymakers, patient advocacy groups, faculty, and students. Participants will gain the fundamentals needed to incorporate CER-PCOR into their every-day work environment. Engaging and Informative sessions will span a broad range of topics:
- Day 1: Fundamentals of CER-PCOR
- Day 2: Patient & Stakeholder Engagement
- Day 3: CER-PCOR Research Methods
- Day 4: Health Outcome Measurement
- Day 5: Translation, Dissemination, and Implementation
For questions or registration, email firstname.lastname@example.org.