Over the last few years, I’ve been very outspoken on the need to engage patients and people with disabilities in efforts to define the value of health care. Engagement has become my ministry because, frankly, what we often find is “token” engagement - a pat on the head, with no real impact on policy development and implementation. I thought we were making real progress on engagement in this administration. It seems I was wrong.
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?
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.
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.
Chairman's Corner: Strategies to Engage and Empower the Patient in Care Delivery: Just Ask the Patient
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.
On November 19, 2014, PIPC held its 5th annual forum in Washington, DC. It is hard to believe that just 5 years ago we had Senator Baucus here talking to us about his vision for a patient-centered research institute that would support patient-centered care delivery. And today, the Patient-Centered Outcomes Research Institute (PCORI) is up and running. PCORI is changing the culture of research by engaging and including patients throughout the research process—from prioritizing research questions to engaging in research design and helping disseminate findings into practice. But as you know, and I know, it doesn’t stop there. For the investment in patient-centered outcomes research to have meaning, we must also have a health system that embraces the same principles of patient-centeredness.
When patient-centered outcomes research “is used well, it can be a powerful tool in making medical care better informed, without limiting patients’ and providers’ choices.” That was the promise that I, and many others, held out with creation of the Patient-Centered Outcomes Research Institute (PCORI) in 2010. Will PCORI achieve this goal? It is increasingly clear that evolving “value-based” payment models in health care, accelerated via the Affordable Care Act (ACA), will play a central role in how that question gets answered
The Partnership to Improve Patient Care (PIPC) recognizes the importance of promoting health care delivery systems that support the related goals of patient-centeredness and medical progress through innovation and ongoing clinical research and analysis. It is from that premise that we came together to support the creation of the Patient-Centered Outcomes Research Institute (PCORI), and from which we advocate for patient-centeredness throughout our health system.
On March 7, 2014, the Partnership to Improve Patient Care (PIPC) convened a group of its Steering Committee members, along with individuals serving on the Patient-Centered Outcomes Research Institute (PCORI) Patient Engagement Advisory Panel (PEAP) and PCORI staff. The purpose of the roundtable was to discuss how PCORI should evaluate its activities against a patient-centered framework using metrics that are most useful to patients.
As I look back at 2013, and ahead to 2014, I’m convinced that the principles guiding the Partnership to Improve Patient Care (PIPC) are more important than ever. PIPC was created to raise awareness about the value of well-designed comparative clinical effectiveness research, the important role of continued medical innovation as part of the solution to cost and quality challenges in health care, and the need to ensure that comparative clinical effectiveness research is centered on patient and provider needs to improve healthcare decision-making. In the year ahead, we’ll face new opportunities and challenges in advancing policies that support these goals
A new national poll sponsored by the Partnership to Improve Patient Care (PIPC) shows that public support for comparative effectiveness research remains strong, as long as it stays focused on giving patients and doctors information to support their individual health care decisions.
The findings, based on a survey of 1,500 registered voters, should be encouraging to policymakers, particularly in view of the broader public ambivalence on health care. When presented with a comparative effectiveness research institute that provides useful clinical information to doctors and patients (similar to the institute created by Congress in the Affordable Care Act), 54 percent of respondents expressed support, compared with 32 percent opposed. This support contrasts with the public’s drop in confidence in the U.S. medical system, which fell to 35 percent in a recent Gallup poll.
Ever since I was young, people turned their back on me because of my disability. Down but not out, I overcame this hurdle and have gone on to devote the past 40 years of professional life to fighting for the disabled in our country. But the fight to improve the lives of people with disabilities did not end there. Today, the fight continues
On Tuesday night, PIPC Chairman Tony Coelho joined former HHS Secretary Tommy Thompson at the University of Charleston in West Virginia for a speaker series titled "Who Decides Patient Treatments" to discuss the future of health care in the United States. The discussion focused on the roles that the patient, government and insurers play in the health care system, as well as, the extent to which patients should be able to choose treatments in consultation with their physician.
Chairman's Corner: A Patient Advocate’s Perspective On Patient-Centered Comparative Effectiveness Research
This post, penned by PIPC Chairman Tony Coelho, originally appeared in the October 2010 edition of Health Affairs.
The Patient Protection and Affordable Care Act created a new phrase and concept:patient-centered outcomes research. The author of this commentary, who served as a member of the US House of Representatives from California, is also a patient with epilepsy and a patient advocate. He consulted with lawmakers in the passage of the health reform law. Here he draws on his varied experiences to provide perspective on how the law will provide the necessary policy framework for patient-centered comparative effectiveness research. Elements of that framework include the meaningful engagement of multiple stakeholders, most especially patients; acknowledgment of individual differences among patients and the importance of advancing personalized medicine; transparency and opportunities to participate; a broad, clinically focused research agenda; and the need to communicate results appropriately.