1. PIPC Holds 6th Annual Forum in Washington D.C., see details below
2. ‘Patient Daily’ Highlights PIPC’s 6th Annual Forum, click here to view the article.
3. Washington Post: Here’s How Patients Can Take a Larger Part in Their Own Care, click here to view the article.
4. Cost-Effectiveness From the Patient's View, click here to view the article.
5. PCORI in JAMA: Update on Stakeholder-Driven Comparative Effectiveness Research, click here to view the article.
6. Does Your Doctor Listen When You Talk?, click here to view the article.
Last week, the Partnership to Improve Patient Care (PIPC) hosted a forum for experts to discuss patient-centered research and the role of the Patient-Centered Outcomes Research Institute (PCORI) in the health care system. The discussion was divided into two panels, with the first focusing on PCORI’s legislative history in relation to patient-centeredness and the second concentrating on the role of dissemination in engaging patients. The panels consisted of representatives from patient advocacy groups, former Senate staffers, and an official from PCORI, with PIPC Chairman Tony Coelho acting as moderator.
PIPC Chairman Tony Coelho provided opening remarks for the event, noting a “renewed interest” in comparative effectiveness research (CER) and the work of PCORI. He explained that researchers need to keep in mind the methods of how information could be disseminated to patients and empower their voices. In this light, Coelho discussed research that was “different than traditional CER,” in both the topics of study and how research conclusions are communicated to clinicians and the public. He concluded that the movement towards patient-centeredness has been transformative and now needs to move towards “patient-directed research.”
Panel 1: PCORI’s Origins and Impact on Patient-Centeredness in Research
Mark Hayes and Sarah Kuehl Egge, who both served as Senate staff when PCORI was negotiated in Congress as a part of the Affordable Care Act (ACA) discussed what they envisioned for the research institute at that time and how closely PCORI has followed congressional intent. Highlights of the conversation include:
- PCORI’s Bipartisan Origin – Both Hayes and Egge emphasized the early “bipartisan support” for an independent institute such as PCORI to complete patient-centered research and “inform clinical, patient, and payer decisionmaking.” Hayes added that from the beginning, PCORI was “not about cost-effectiveness.” Hayes and Egge asserted that a contentious issue was how to establish funding for PCORI, which could have been challenging due to possible “political interference” with the annual appropriations process. Therefore, a sustainable funding stream from insurance plans was constructed for the PCORI Trust Fund. Hayes harkened back to the bipartisan Medicare Modernization Act (MMA) and the creation of the Effective Health Care Program by Section 1013 as the early beginnings of discussions about “patient-centered” research.
- Including Patients in the Process – Coelho noted that in the early implementation of PCORI “patients were not really part of the process at first,” with both panelists agreeing with that observation. Egge added that PCORI’s increasing focus on bringing patients into the research process is “what we [Congress] imagined all along.” Hayes concurred, saying that the “intent is clear in the [PCORI’s] name itself.”
Both panelists also lauded PCORI’s role in moving patients to the center of the research process. Hayes noted its importance in defining what “patient-centeredness” truly means in a research setting, but added that there is work to be done as the health system still “measures a lot of things that don’t matter to the patient.” However, according to the panelists, the overall change in research has been very positive as research now looks at patient outcomes upon discharge from the hospital setting. Coelho agreed with this characterization saying that PCORI and patient-centeredness have created a “whole new approach” to health care that many have not understood or appreciated when legislated.
- Importance of Stakeholder Input – An audience member asked about patient input into research when there is no consensus among patient groups about the best way to approach a disease. Egge responded that PCORI was designed as a “consensus-based organization,” which can present challenges when there is a divide in the patient and stakeholder community. Hayes added that there “must be relevance for both clinical types and the patients,” with past research directed almost entirely by researchers rather than patients.
Panel 2: PCORI Research and Dissemination
Two representatives of patient advocacy groups, Linda House of the Cancer Support Community and Andrew Sperling of the National Alliance on Mental Illness, discussed PCORI research priorities and its ability to disseminate findings to patients with PCORI Chief Engagement Officer Jean Slutsky. Highlights of the discussion include:
- PCORI’s Efforts in Dissemination of Research – Sperling touted that PCORI has a significant contingent of staff dedicated to patient engagement, stating, “no NIH [National Institutes of Health] institute has anything like this.” He added that research “has to get down to the level of the individual clinician,” and that the future of patient-centered research will be tied to dissemination. For her part, Slutsky explained that results from studies will be coming online within 9 months and that PCORI is investigating “how to best communicate certainty about findings.” House amplified the need to identify value to the patient and outcomes that matter to patients to drive improve health decisions. House also emphasized the need to advance “patient-directed” care with patient-centered outcomes research.
- Recognizing Disparities in Research – An audience member asked about setting research priorities for minorities, particularly in terms of dissemination. Slutsky responded that the PCORI Board had made addressing disparities a priority, including in dissemination. She noted that the barriers in dissemination included not only different languages, but also unfamiliarity with numbers, i.e. numeracy. Slutsky finally noted that to address the problem, PCORI was working on using pictures and reverse translation to accurately convey research findings.
- Resources to Empower Patients to Engage in Research, Policy and Advocacy – A question from the audience focused on PCORI’s role in promoting patient advocacy, with Slutsky answering that the institute does not provide resources for advocacy, but does offer support. She was quick to point out PCORI’s Pipeline to Proposals initiative as a way to promote patients to participate in patient-centered research. Sperling agreed with PCORI’s approach, saying that the best way for patients to participate in research was to “engage with PCORI.” While recognizing PCORI’s progress toward patient-centeredness, House noted that community organizations are ideally situated to conduct patient-centered outcomes research, and would like to partner with PCORI, but are challenged by the cumbersome application process. House urged for PCORI to establish more community-based research opportunities outside of academia.
Chairman Coelho closed the meeting by noting that culture change is not easy, something he experienced firsthand in passing the Americans with Disabilities Act, which just had its 25th anniversary. PIPC advocated strongly for PCORI’s creation because its members recognized the need for a stronger patient voice in research so that our needs are supported by the healthcare system. He emphasized that no patient is average and, therefore, quality and value should be based on achieving the outcomes that matter to patients. He ended by praising PCORI’s work and calling on stakeholders and policymakers to advocate for and advance patient-centered policies in health care.
2. ‘Patient Daily’ Highlights PIPC’s 6th Annual Forum
A new article in Patient Daily highlighted PIPC’s 6th annual forum: “Chairman Tony Coelho took the time to discuss what he learned throughout the forum and how it contributes to PIPC’s primary objectives of patient-centered research. The risks associated with qualifying ‘value’ in health care are that ‘There is no algorithm for value to the patient,’ Coelho told Patient Daily. ‘Current efforts to define value look at an algorithm of cost and clinical benefit often based on purely biological factors. Value to the patient is defined by achieving the outcomes that matter to patients, which are often a measure of their quality of life, like mobility and function, cognition, fatigue, dexterity, the ability to go to work or school, or the potential for long-term disability.’
“Some ways the health care system can offer better value, while still respecting the diverse needs of patients, is ‘driven by achieving outcomes that matter to patients’ and their diverse needs, Coelho said. ‘This simply requires that patients and providers have access to decision aids and shared decision-making tools that enable them to measure the impact of treatments on the various outcomes that matter to patients so they can choose the one that is right for the patient. If value is driven by achieving outcomes that matter to patients, then we will have respected the diverse needs of patients," Corlho said. "If we see patients as one-size-fits-all, then we have failed the patient.’ Coelho said that since its founding, PIPC has been at the forefront of patient-centeredness in comparative effectiveness research (CER). Having driven the concept of patient-centeredness in the conducting of research, PIPC looks forward to bringing patients' voice to the discussion of how to advance patient-centered principles throughout an evolving health care system.” Click here to view the article.
3. Washington Post: Here’s How Patients Can Take a Larger Part in Their Own Care
A recent article in the Washington Post outlines a number of ways for patients to become more engaged in health care. Here are a few:
Discuss your needs. “Gather up with your friends and family and talk about what you want out of health and health care,” said Victor Montori, a professor of medicine at the Mayo Clinic in Rochester, Minn. “Health care can be improved, it can be changed,” he said. “While you’re still healthy enough, you have a role to play to make health care much more careful and kind and responsive to your needs.” You should step up and speak up, getting involved in change, he advises.
Engage your doctor. DeBronkart suggests you set a tone of give and take with a new doctor by saying, “I’m the kind of patient who likes to understand as much as I can about my health. Can I ask some questions?”
Help manage your own care. Ideally, individuals can manage their health by seeking reliable online information and online support communities, by self-monitoring (weight, blood pressure, etc.) in some circumstances, and by maintaining a healthy lifestyle, said Danny Sands, a Harvard Medical School assistant professor who co-founded the Society for Participatory Medicine. When you need to interact with providers, try to share information and decisions with mutual respect, Sands said.
Ask informed questions. Refer to the “Choosing Wisely” campaign, which offers information and questions that patients and providers should discuss on a range of health issues, including the necessity of various medical tests and procedures.
Join an online patient community. If you or a loved one is battling a major, chronic or rare illness, access and share information on sites such as Smart Patients, PatientsLikeMe and Inspire.com. Read the site’s mission statement and choose a community you find welcoming, with a culture based on sound medical evidence and on transparency regarding funding. With even your first posting, you’ll be able to tell how an online community embraces its members, says Gilles Frydman, co-founder of Smart Patients. Your doctor may be able to help you choose a good fit.
Join the quality improvement team at your local hospital. More and more hospitals are creating advisory councils that seek patient and caregiver input to improve care.
Volunteer to be a patient peer reviewer. The BMJ invites patients living with disease, caregivers and patient advocates to comment on research, education, analysis and commentary articles.
Help set research agendas. Contributions from patients and caregivers are critical to the mission of the Patient-Centered Outcomes Research Institute. There are several ways to get involved with PCORI: suggesting a patient-centered research question, providing input or reviewing funding applications. There are also opportunities to join advisory panels on subjects such as treatment or patient engagement.
Click here to view the full article.
4. Cost-Effectiveness From the Patient's View
A new article from The American Journal of Managed Care reports that “too often in healthcare, the main concern of insurers and health professionals becomes focused on financial optimization over patient benefit. A recent University of Michigan Medical School study analyzed the true cost-effectiveness between 2 stroke medications: from the viewpoint of society and the insurer and from the viewpoint of the patient. The 2 drugs were dabigatran, a powerful but expensive therapy, and warfarin, a much cheaper but also less effective therapy… With so many benefit/risk calculations to consider when it comes to choosing a medication, patients can become overwhelmed. Therefore, doctors and patients need to collaborate to choose therapies based on individual circumstances and coverage.” Click here to view the article.
5. PCORI in JAMA: Update on Stakeholder-Driven Comparative Effectiveness Research
In an op-ed published in the Journal of the American Medical Association (JAMA), PCORI’s Joe Selby, MD, Laura Forsythe, PhD, and Hal Sox, MD describe the role of stakeholders in developing research questions, reviewing research applications, and conducting research as part of the PCORI research enterprise. As detailed in an excerpt from the article, “Congress authorized the Patient-Centered Outcomes Research Institute (PCORI) in 2010 to fund comparative clinical effectiveness research (CER) ‘to assist patients, clinicians, purchasers, and policy-makers in making informed health decisions.’ This charge is unique. No other health research funding agency is restricted to funding CER, defined as ‘comparing health outcomes and the clinical effectiveness, risks, and benefits of 2 or more medical treatments, services….’ No other funding agency must address the research needs of the entire range of stakeholders in the health care enterprise. To respond to these mandates, PCORI’s board of governors, methodology committee, and staff have built a novel ‘stakeholder-driven’ approach to doing CER. The premise: research is more likely to improve the care of patients if they and other key stakeholders are involved in all aspects of the research.” Click here to view the article.
6. Does Your Doctor Listen When You Talk?
In a The Washington Post article, Suzanne Allard Levingston reports, “Patient-centered thinking affects research as well, encouraging studies that examine which treatments are most likely to produce ‘outcomes that matter to patients,’ said Joe Selby, executive director of the nonprofit Patient-Centered Outcomes Research Institute. PCORI, created and funded through the Affordable Care Act, has financed research into follow-up treatment for children hospitalized with bone infections. In standard practice, intravenous antibiotics are given at home for a few weeks, burdening families with maintaining the intravenous line, keeping it clean and having a nurse check it. Many doctors have believed that oral antibiotics work just as well, at less cost and much less hassle for families, but there was no evidence.” Click here to view the article.