The Patient-Centered Outcomes Research Institute (PCORI) was established in 2010 to establish priorities and set an agenda for the conduct of comparative clinical effectiveness research (CER). Its Board of Governors is selected by the Government Accountability Office (GAO), and includes three designated seats for representatives of patients and consumers. GAO concluded in a March 2018 report that PCORI is fulfilling its Congressional mandate to generate evidence that patients and those who care for them can use to make better-informed healthcare decisions. Following the National Academy of Medicine's definition of CER, PCORI invested nearly $2.4 billion in more than 600 patient-centered CER studies and related projects that support CER to date. PCORI’s Methodology Committee, also appointed by the GAO, provides guidance to the PCORI Board of Governors and its contract researchers about the appropriate use of CER methods, methodological standards, as well as establishing priorities to address gaps in research methods or their application.
 As Chairman of the Partnership to Improve Patient Care (PIPC), I have seen tremendous progress in the patient-centeredness movement, particularly in changing the culture of medical research. Yet, our leaders should know that we still have a long way to go to give patients, people with disabilities, veterans and caregivers a voice in how we deliver care that patients value. They deserve a seat at the table in any discussion of health care policy, as well as meaningful opportunities to voice their unique and real experiences
 I’m the mother of a wonderful girl named Shannon, who has a rare genetic condition called Phelan-McDermid syndrome. For years I steered clear of research information about her condition and focused on the daily challenges of meeting her needs. It never occurred to me that beyond being Shannon’s mom and caregiver I would play another vital role – as part of the research community helping her and others like her live a better life.
The Washington Post: PIPC's Tony Coelho Discusses Need for Change in Medicare's Innovation Center12/13/2016
 In response to Washington Post opinion article, "Keep this part of Obamacare," PIPC Chairman Tony Coelho emphasizes the fact that while the Center for Medicare and Medicaid Innovation (CMMI) appears to be doing "some good work," it is also in serious need of changes to protect patients. "The Innovation Center created significant (if unintended) risks with some models that patients identified as going too far and driving “one-size-fits-all” care in stark contradiction of the nation’s drive to develop targeted therapies under the Precision Medicine Initiative and Cancer Moonshot," Coelho writes. "We all want health care to pay for value and not volume, but the real question is value for whom?"
Hon. Tony Coelho PIPC Chairman, Patient Advocate Proposals for Medicare and private payers to use CER are understandable, but concerning. Understandable because the challenge of rising costs is real, and policy-makers naturally reach for familiar policy tools. Concerning because it would pull CER away from individualized patient decisions and back towards centralized payer decisions. The end result would be limited choice of treatments based on one-size-fits-all determinations of 'value' for the average patient.  What's the most important question facing any patient with a life-threatening illness?
"Which treatment option is best for me?" By most accounts, this is a good problem to have; giving patients a range of treatment options, and the ability to make an informed choice about the regimen that most directly aligns with their personal health priorities is fundamental to high-quality, individualized health care. But along with these new methods for treatment come difficult questions. Do I want the more aggressive or conservative therapy? Is my quality of life during treatment more important than returning to work quickly? Which course of action has more tolerable side effects? Can I afford the care I need? What's the most important question facing any patient with a life-threatening illness?
"Which treatment option is best for me?" By most accounts, this is a good problem to have; giving patients a range of treatment options, and the ability to make an informed choice about the regimen that most directly aligns with their personal health priorities is fundamental to high-quality, individualized health care. But along with these new methods for treatment come difficult questions. Do I want the more aggressive or conservative therapy? Is my quality of life during treatment more important than returning to work quickly? Which course of action has more tolerable side effects? Can I afford the care I need? Today, at the Reserve Officers Association in Washington, D.C., 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. Topics discussed include efforts to include patients in the research process, addressing disparities in research, and ensuring that research is disseminated in a way that allows patients and clinicians to use it in their decisionmaking process.
Many people want to quantify “value” in health care. But for the ultimate beneficiary, the patient, value is more personal. That doesn’t mean we can’t get better value, it just requires us to find ways that respect patients and their diverse care needs and preferences. This was the big message I took away from a roundtable recently convened by the Partnership to Improve Patient Care (PIPC) and the Cancer Support Community (CSC) with many leading organizations representing cancer patients.
 In a new op-ed published in Roll Call, PIPC Chairman Tony Coelho weighs in on the debate of using comparative effectiveness research (CER) to control medical spending. Chairman Coehlo emphasizes that "proposals for Medicare and private payers to use CER are understandable, but concerning. Understandable because the challenge of rising costs is real, and policy-makers naturally reach for familiar policy tools. Concerning because it would pull CER away from individualized patient decisions and back towards centralized payer decisions. The end result would be limited choice of treatments based on one-size-fits-all determinations of 'value' for the average patient."
After five years of progress towards patient-centered comparative effectiveness research (CER), the Center for American Progress (CAP) threatens to unwind it by reviving the old debate over using CER to control medical spending. Proposals for Medicare and private payers to use CER are understandable, but concerning. Understandable because the challenge of rising costs is real, and policy-makers naturally reach for familiar policy tools. Concerning because it would pull CER away from individualized patient decisions and back towards centralized payer decisions. The end result would be limited choice of treatments based on one-size-fits-all determinations of “value” for the average patient.
Results from a poll of 1,500 registered voters strongly suggest that Americans want to be active participants in determining their healthcare treatments, and prefer limited government intervention when it comes to the treatments they can access.
There’s a lot of talk right now about moving health care towards value-based payment models. But will these new models reward care that patients actually value? Maybe. It depends, first and foremost, on bringing patients into the conversation and giving them a meaningful voice.
The Affordable Care Act embraced important patient-centered principles, through the creation of the Patient-Centered Outcomes Research Institute (PCORI), and its embrace of concepts like shared decision-making in health care. The shift from a payment system based on quantity to quality could be promising – depending on how we define quality. But if the healthcare system of the future is to achieve outcomes that matter to patients, it must systematically engage patients in their own healthcare decision-making and in governance. Without this sustained commitment, the enterprise will too easily slip to one that merely rewards providers for achieving cost containment through fewer treatment or service choices for patients. The Partnership to Improve Patient Care (PIPC) today released a detailed summary and recommendations from an expert roundtable it convened April 15 of this year to explore strategies for engaging and empowering patients in care delivery. Convened by PIPC Chairman Tony Coelho, the roundtable consisted of 17 thought-leaders in the area of patient engagement and activation, all of whom shared their concerns about the existing health care infrastructure for meaningful patient and beneficiary engagement, and provided ideas for improvement.
 As highlighted in an article in Inside Health Policy, "more than 60 patient groups and members of [PIPC] are asking HHS to make the Health Care Payment Learning and Action Network patient-centered by including patient groups in the network and using best practices from the FDA and Patient-Centered Outcomes Research Institute to solicit patient engagement with the initiative." 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 PIPC led this letter - to ensure that that patients have a seat at the table in determining how these new payment models are implemented.
“I look forward to collaborating with HHS to effectively bring the patient voice to their ambitious new framework to move our health care system away from rewarding health providers for the quantity of care they provide and toward rewarding quality. Empowering patients to play an active role in their healthcare should be a strategic and achievable goal of this important work,” Partnership chair Tony Coelho told Inside Health Policy. |