How would you judge the value of your health care? A longstanding definition of treatment holds that value is the health outcomes achieved for the dollars spent. Yet behind that seemingly simple formula lies much complexity.
Think about it: Calculating outcomes and costs for treating a short-term acute condition, such as a child’s strep throat, may be easy. But it’s far harder to pinpoint value in a long-term serious illness such as advanced cancer, in which both both the outcomes and costs of treating a given individual—let alone a population with a particular cancer—may be unknown for years. And then there’s the complicating issue of our individual preferences, since one person’s definition of a good outcome—say, another few years of life—may differ from another’s, who may be seeking a total cure.Continue reading…
At the Patient-Centered Outcomes Research Institute (PCORI), we believe comparative clinical effectiveness research (CER) is important and that we have a critical role to play in establishing the nation’s CER priorities. I’m pleased to say that many respondents to the latest National Pharmaceutical Council (NPC) survey think so as well.
While results of CER studies that we and others are funding have yet to be completed, and CER’s ultimate ability to transform our healthcare system is still years away, nearly all respondents in this fourth annual survey agree that CER is here to stay and that it will become increasingly important in aiding decision making. Respondents also indicated that CER has not yet assessed the broader array of outcomes that matter to patients.
These are important insights. The survey tracks the attitudes of researchers, policymakers, employers, business groups, insurers, and health plans. Engaging with these stakeholders – along with patients, caregivers, clinicians, and other providers – and ensuring that the work we fund provides evidence they can trust and use, are essential if CER is to realize its potential in guiding health care.
That’s why Congress authorized PCORI’s establishment as an independent, non-profit organization focused on ensuring that the broad healthcare community is meaningfully engaged in our work. We’re governed by a diverse board that represents all stakeholders. And through an open and collaborative approach to research, we’re identifying the questions patients and other clinical decision makers need answered, so they can make better-informed choices that will lead to better outcomes.
We’ve already awarded $464.4 million to support 279 studies that advance patient-centered CER and we expect to commit another $1 billion over the next two years.
PCORI is pleased to announce the PCORI Matchmaking App Challenge. This initiative seeks to create research partnerships that allow innovators and patients to work together. Developers are invited to make a full functioning, ready-to-publish app that has the capability to connect patients with researchers.
We are inviting developers to create an app that brings together patients, stakeholders, or researchers, and move toward collaborative research. These apps must integrate with already established research networks, and preferably integrates social media and robust user profiles. The developer is also encouraged to include an advanced search option and customizable displays.
Reviewers will include technology experts, PCORI staff members, and members of PCORI’s multi-stakeholder Advisory Panels. Reviewers will consider how well each developer facilitates connections that allow equal access to people from different backgrounds and with varying health interests and research experience, as well as considering creativity and the past experience of the developers.
The rewards are substantial, with PCORI awarding first place with $100,000, second place with $35,000, and third place will take home $15,000.
How to Apply
To enter your team for the Challenge, please go to the pre-registration form.
PCORI and Health 2.0 will host an hour-long informational webinar on Wednesday, April 30, at 1 p.m. (ET) to present the challenge goals and guidelines. We will describe the motivation behind and purpose of the Matchmaking App Challenge; explain the submission guidelines, judging criteria, and other conditions of the challenge; and answer questions from potential applicants. Registration for the webinar is now open. Questions and answers will be posted after the event.
Fifty years ago, President Lyndon Johnson signed designated February as American Heart Month to acknowledge and combat the “staggering physical and economic loss to the nation” caused by cardiovascular disease.
Unfortunately, that proclamation is proving to be a timeless document.
Even with broad awareness of heart disease, expansive research and a number of clinical and public health efforts to prevent, diagnose and treat cardiovascular conditions, it remains the leading cause of death in the nation. About 600,000 people die from heart disease in the United States each year—making it responsible for one out of every four American deaths.
As a research institute dedicated to helping patients and those who care for them make better informed decisions that lead to better outcomes, the Patient-Centered Outcomes Research Institute (PCORI) is acutely interested in producing new information that supports more effective cardiovascular care. The directive in our establishing legislation to consider “disease incidence, prevalence, and burden” when prioritizing research funding is a clear call for studies of cardiovascular conditions.
I’m proud to say that PCORI has answered that call. Cardiovascular disease, including heart disease and stroke, is the most commonly studied topic in our research portfolio. It is addressed in several dozen of the 192 primary research studies that PCORI has funded to date, including projects that conduct a comparative assessment of heart disease interventions, as well as those that test the effectiveness of decision support tools. Communicating information and providing tools to patients in ways that motivate them to make healthy choices is often a major challenge for clinicians.
Our comprehensive approach funds research that addresses the gaps in both information and communication that are responsible for poor outcomes in cardiovascular care.
In the New York Times on Thursday, October 17, Topher Spiro wrote an important op-ed expressing why we need to hold onto the medical device tax that helps pay for parts of the Affordable Care Act. Spiro backs up his argument by pointing out how profitable the device industry is. To his argument I would also add the fact that this will provide the industry with more paying customers. Certainly it can afford to pay the taxes.
But I diverge from Spiro on a proposal he floated near the end of his piece:
“To complement these efforts, the new Patient-Centered Outcomes Research Institute [PCORI], a non-governmental body created by the Affordable Care Act, should pay for research that compares the effectiveness of devices so physicians can make informed choices. (Three years into its existence, the institute has initiated few, if any, studies of medical devices.”
Listen to me PCORI. Don’t follow this advice, unless you plan not to survive to celebrate your fourth birthday.
Consider what happened to the Agency for Healthcare Policy Research (AHCPR), when it tried to help physicians figure out the best way to treat low back pain. AHCPR was created as a stand-alone research institute, akin to the NIH, but one that would focus not on the basic science of treating disease, but instead on evaluating how well existing treatments worked.
One of our core beliefs at PCORI is that patients, clinicians, and other front-line caregivers, and others across the healthcare community have the potential to become valued and real partners in the patient-centered outcomes research (PCOR) we support. We practice what we preach in the requirements we place on applicants for our funding and the way we evaluate their proposals.
So we’re pleased today to announce the latest example of how we’re making that principle real – a new funding program called the PCORI Engagement Awards and the first funding opportunity under this program, the Pipeline to Proposals Award.
Listening to our stakeholders
We got the idea for the Engagement Awards program last October, during our first patient engagement workshop. We asked workshop participants to provide input into how we can better serve and connect with patients and the communities interested in being involved with rigorous PCOR– which is, comparative clinical effectiveness research focused on and guided by the needs and concerns of patients. The response was a clear and broad expression of passion, expertise, and willingness within the patient and broader healthcare community to help us pursue this approach to research. The question was how best to do it.
From that discussion was born our Engagement Awards program, which is designed to leverage the community’s passion and expertise by offering targeted funding to dozens of groups of patients, providers and other healthcare community stakeholders interested in supporting the expansion of high-quality, useful PCOR and the implementation of its results.
Our philosophy is that, when the research process incorporates the perspectives of the entire healthcare system and focuses on the questions important to patients and those who care for them, the results are far more likely to be meaningfully incorporated into clinical decision-making and practice.
The Engagement Awards program will have three distinct categories:
- Knowledge Awards, which will fund activities such as background papers, landscape reviews, and development of mechanisms to share research results.
The Patient-Centered Outcomes Research Institute has just appointed four new advisory panels that will help guide hundreds of millions of dollars in research grants. Unfortunately, while PCORI released the new advisers’ names, it neglected to tell the public who the advisory panel members really are.
Let me explain. PCORI says its advisory panels “will be instrumental in helping us refine and prioritize research questions, provide needed scientific and technical expertise [and] offer input on other issues relevant to our mission.” Panel members represent specific stakeholder groups mandated by Congress and are appointed for one year, but they can re-up for another term.
That kind of influence invites attention, and more than 1,000 individuals applied for 82 available spots. Three of the panels correspond to topics that are PCORI national priorities for research: addressing disparities; assessment of prevention, diagnosis and treatment options; and improving healthcare systems. The fourth addresses patient engagement.
So who did PCORI pick? Well, people like Charlotte Collins of Elkridge, MD, representing “patients, caregivers and patient advocates” on the patient engagement panel. That’s the sum total of identifying information given on Ms. Collins and other panel members; there is no educational or professional information at all.Continue reading…
Conservatives love to apply “cost-benefit analysis” to government programs—except in health care. In fact, working with drug companies and warning of “death panels,” they slipped language into Obamacare banning cost-effectiveness research. Here’s how that happened, and why it can’t stand.
Why are you reading this when you could be doing jumping jacks?
And how come you’ve gone on to read this sentence when you could be having a colonoscopy?
You and I could be doing all sorts of things right now that we have reason to believe would improve our health and life expectancy. We could be working out at the gym, or waiting in a doctor’s office to have our bodies scanned and probed for tumors and polyps. We could be using this time to eat a steaming plate of broccoli, or attending a support group to help us overcome some unhealthy habit.
Yet you are not doing those things right now, and the chances are very strong that I am not either. Why not?
The new Patient-Centered Outcomes Research Institute (PCORI) has been asking different stakeholders about the most important issues to address with the hundreds of millions of dollars the quasi-governmental group will shortly be doling out in grants. Not surprisingly, the stakeholders have been more than happy to respond.
PCORI’s most recent day of dialogue, which I attended as a representative of the Society for Participatory Medicine (SPM), was characterized by genteel civility and a big question mark: “Is PCORI serious about transforming health care?” When I asked directly, I didn’t get much of an answer. The reason, I suspect, goes to PCORI’s origins. It is the offspring of a shotgun marriage between goo-goos and pinky-ringers, and no one is quite sure yet what this child will be once it grows up.
Let me pause here a moment to parse the political shorthand. “Goo-goos” are “good government” types, the kind of folks who trumpet the need for transparency in government or better public transit. Goo-goos, seeing the half trillion dollars or so of waste in U.S. health care system, called for a new national organization to carry out comparative effectiveness research in order to help Americans get the most value for our money.
The goo-goos pointed out that our current regulatory structure is designed to ensure that treatments are safe and effective, not compare them. Nor does the private sector have much incentive to pay for comparative studies that may undermine products currently selling quite nicely, thank you.