1. PIPC Patient Blog: Laura Roix, click here to view the blog post.
2. PIPC Welcomes New Signatures on Letter to HHS Seeking Patient Engagement, clickhere to sign the letter.
3. Academy Health Highlights PCORI’s Stakeholder Engagement Rubric, click here to view the blog post.
4. CMS Finalizes Rules for Medicare Shared Savings Program, click here to view the press release.
5. PCORI Director: Advancing The Use Of Health Data In Research With PCORnet, clickhere to view the article.
6. Health Affairs Blog: Accountable Care Organizations Taking Hold And Improving Health Care In California, click here to view the article.
7. Rigorous Methodology Key to Comparative Effectiveness Research, click here to view the article.
In the latest installment of the PIPC Patient Blog, Laura Roix discusses her battle with idiopathic pulmonary fibrosis (IPF), and how she’s empowered herself in her own care. Ms. Roix writes: “After going through multiple false diagnoses from a number of doctors, I finally found what worked for me: self-advocacy and perseverance. Until I got to that point though, I went through 6 years of difficult medical experiences that finally led me to become a self-advocate for my medical care…. Since I’ve started advocating for my own medical care, I have gained experience working with welcoming and open medical professionals. I’ve learned that it is important to keep your caregiver involved, because even though he or she is not the patient, they will have concerns about your well-being and can recommend treatment options. Your caregiver will have questions that come from a completely different perspective but are just as important.” Click hereto view the blog post.
The Partnership to Improve Patient Care (PIPC), along with over 70 individual patients and patient organizations—themselves representing millions of patients nationwide—sent a letter to the Department of Health and Human Services (HHS) asking them to recognize patients as key stakeholders in the Better, Smarter, Healthier initiative and in the Health Care Payment Learning and Action Network. First, PIPC welcomes additional signatures on the letter and will publish an updated signature list for HHS in early June to demonstrate the enthusiasm of patients to be engaged in their work. Second, PIPC urges patients and patient organizations to join the Network and to seek leadership positions for patients among its committees as they are being established.
While most patient stakeholders agree that paying for “value” rather than “volume” will result in better outcomes for patients, the shift to value-based payment holds significant implications for the patient-centeredness movement and the related issues of patient access and the physician-patient relationship. That’s why it’s important that patients have a seat at the table in determining how these new payment models are implemented.
In response to our letter, the Department of Health and Human (HHS) services issued a letter affirming that "patient engagement will be critical to the success of meeting our goals." Dr. Conway, the Acting Principal Deputy Administrator of CMS, states his appreciation for the recommendation that HHS review the patient engagement methodologies developed by the FDA and by PCORI, and states that "we will consider these patient engagement strategies and other bast practices across HHS." We look forward to continuing to engage with HHS on strategies that ensure the patient voice is front and center.
AcademyHealth comments in a recent blog post, “one of the big forces behind the push for meaningful stakeholder involvement in research is simply that funders are starting to require it. The Patient-Centered Outcomes Research Institute's (PCORI) engagement rubric offers guidance and details how, when, and at what level stakeholders should be engaged in patient-centered outcomes research (PCOR). PCORI's leadership has helped spur greater interest and infrastructure investment among research and other organizations. Despite these efforts, many questions on how to design and execute an effective approach to engaged research remain unanswered… The compendium also provides resources on three areas closely related to stakeholder engagement in PCOR: 1) community-university partnerships, 2) patient involvement in health care and 3) community-based participatory research. While these resources have a slightly different focus, we think they can be useful in building your—and your organization’s—capacity to conduct engaged research.” Click here to view the blog post.
According to a recent press release, “the Centers for Medicare & Medicaid Services (CMS) [has] released a final rule updating the Medicare Shared Savings Program to encourage the delivery of high-quality care for Medicare beneficiaries and build on the early successes of the program and of the Pioneer Accountable Care Organization (ACO) Model. This final rule is an effort to provide support for the care provider community in creating a delivery system with better care, smarter spending, and healthier people.” Click here to view the press release.
In a recent post on Health Affairs Blog, PCORI Executive Director Joe Selby comments, “One major challenge experienced by PCORI and others working in this area is that EHRs and other repositories of clinical data don't follow global standards for how data are collected, stored, and transmitted...PCORI doesn't have the authority or leverage to impose data standards on EHR vendors, health systems, or physicians. So, instead, we meet the data where they are by using a Common Data Model (CDM). Nevertheless, a national movement toward greater agreement on and implementation of data standards for capture, storage, and exchange would not only benefit clinical care but also make secondary uses of clinical data for large-scale clinical research more efficient and secure.” Click here to view the article.
As detailed in a recent Health Affairs Blog post, “there is new evidence that California’s Accountable Care Organizations (ACOs) are growing in size and number, serving more patients, and improving quality of care…. While patients can go anywhere for their care, the ACO is still accountable for their treatment and the costs incurred, so there is an incentive for the ACO to make specific efforts to engage patients in their own care management and keep them within the umbrella of the ACO. This is particularly important for the management of chronic illness, which requires the involvement of patients and their families to avoid preventable hospital admissions and re-admissions and emergency department visits. There is much to be learned about how best to engage patients and families in their care.” Click here to view the article.
ASCO Daily News reported last week, “Although comparative effectiveness research (CER) has been conducted for decades in the health care community, it has recently begun to receive an increasing amount of funding and attention… ’There has slowly been recognition that, up until now, there was a lot of focus on a provider-centric approach to health care, looking at things that are important to providers, such as morbidity, mortality, or complications,’ [Caprice Christian Greenberg, MD, MPH] said. ‘Slowly, we are starting to recognize the importance of ‘patient centeredness' and finding ways to measure outcomes that are meaningful to patients.’ According to Dr. Greenberg, patient centeredness is a critical part of CER, focusing on the idea of engaging patients and other stakeholders in research that can help to define outcomes, as well as other aspects that will change the quality of care as the patient experiences it.” Click here to view the article.