The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization created by Congress in 2010. Our mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions.
We’re committed to continuously seeking input from a broad range of stakeholders to guide our work. So as part of that effort, we’re asking for public comment on our first draft National Priorities for Research and initial Research Agenda, which provide a framework for and identify the broad questions that must be addressed so that patients can make better and more personalized decisions in partnership with their clinicians.
We released the draft priorities and agenda on January 23 for a public comment period that runs through 11:59 pm EST on March 15. You can read the draft priorities and agenda, answer 10 questions about them and provide general comments, here
We encourage you to provide comment through our website, but we’ll also accept input by mail. Responses received through pcori.org will be displayed for public view on the site.
After reviewing public comments and other feedback, PCORI will publish a report summarizing the input and explaining how it led to changes in the draft priorities and agenda. PCORI’s Board of Governors then must adopt the priorities and agenda before primary funding announcements can be issued.
PCORI is counting on you and your colleagues to you to help shape our national priorities and research agenda. Your feedback and perspective will help insure that our work is responsive to the needs of patients and those who care for them.
So please visit pcori.org today to provide comment. And to receive regular updates and funding announcements from PCORI, please subscribe to our mailing list.
Bill Silberg is the Director of Communications at PCORI. Reach Bill at email@example.com.
Filed Under: Pharma, THCB
Tagged: Outcomes, Pharma, The Affordable Care Act
Mar 12, 2012
To be a patient today is to be treated as a consumer. But treating patients as typical proactive, in control, well-informed consumers can backfire. Asked to take on increasingly complex decisions and digest ever-larger amounts of information, patients find themselves placed — often by design — in the driver’s seat. High-deductible insurance plans aspire to make the cost implications of care more transparent and implicitly shift decision-making to members. The “empowered patient” movement encourages patients to become hyper-informed and to take control over their care. But providing greater information, access and autonomy — so often successful in consumer settings — does not necessarily drive better care or experience. Consider these cases:
- An unexplained black-out sent a 61-year-old Boston woman to the emergency room and set off a flurry of visits to specialists to uncover the cause. Each doctor needed records of the diagnostics from previous visits. Hospital policy, however, required that patient data be released only to the patient, meaning she had to return to the hospital prior to any new specialist visit. Requiring her to control the information flow burdened her in the midst of a medical crisis.
- After years of struggling with her weight, a New York mother underwent bariatric surgery. She was inundated with information from her medical team about how she would need to change her behavior. Guidelines around when, how, and what to eat or not eat — the rules were overwhelming and constraining. Before long her weight had jumped again. For this woman, an excess of information (along with an assumption that she was prepared to absorb it) was part of the problem, not the solution.
Continue reading “The Trouble with Treating Patients as Consumers”
Filed Under: Pharma
Tagged: health care delivery, Mayo Clinic Center for Innovation, Pharma
Feb 17, 2012
Lots of health startups out there are trying to zero in on ideas that will improve the lives of patients with chronic conditions. And even though patients are the target audience of this technology, companies seem to be designing their products by first asking, “What will health care providers and and health insurers pay for?” It makes sense, assuming that these two groups will foot the entire bill for electronic health (e-Health) innovations. But it doesn’t make common sense. Why not design the tech for those who are going to use it in the end?
The discussion came up at the Digital Health Summit, a two day conference at the International Consumer Electronics Show. Health 2.0′s Matthew Holt moderated a segment called “Who’s Paying the Bill for e-Health?” When Holt asked a panel if consumers would be willing to pay, Senior Advisor of of the American Association of Retired Peoples Bill Walsh indicated that most AARP members would answer “no.”
“What they’re telling us about mobile health is, ‘Gee, this is interesting but why isn’t my insurance company paying for this? This is just another medical device,’” Walsh said.
Continue reading “Will Consumers Pay for e-Health?”
Filed Under: Uncategorized
Tagged: CES, digital health, Pharma
Jan 23, 2012
Most people are getting their health insurance through their employer. That has been changing slowly, but with healthcare reform, many more people will be left to select their own plans without the pre-selection and help from their employer. What used to be a choice among 3-5 plans is soon to become a selection from dozens of health insurance companies each offering a dozen plans to choose from. And selecting an insurance plan is not like getting car insurance; family makeup, prior health issues, future healthcare needs, and affordability – they all matter. In other words, it’s very personal.
As in other insurance industries, there will be a number of options to help consumers, such as agents and brokers. Cost is one of the most important criteria, but the problem of predicting the impact of plan choices on out-of-pocket costs is much harder, since selecting a plan is such a personal choice. Our needs and therefore expenses also change over time, as we go through different life stages.
As in many industries, there is a lot of data one can harness to help with these decisions. One benefit we see emerging is the availability of personal power tools (similar to financial planning tools) that allow for detailed modeling of an individual or family’s situation. These tools predict likely health care needs and allow one to compare the detailed expenses given different insurance plans. Starting a family? Entering your fifties, with its slew of clinically advised exams? Dealing with the ups and downs of a chronic condition? Those factors can all be taken into account to provide detailed plan options and price comparisons to help choose the optimal health plan.
Continue reading “Health Care Power Tools for Consumers”
Filed Under: Pharma
Tagged: Insurance, Markus Fromherz, Pharma
Jun 30, 2011
The recent post on Google Health going into the deep freeze has solicited a number of emails, including some from the press. In one of those emails a reporter had spoken to several industry thought leaders to garner their opinions which follow:
Consumers will not sign on to most Personal Health Platforms (PHPs) or services due to the issue of trust.
- Leading researcher and developer of an open PHP.
Provider sponsored PHPs and patient portals will dominate the market for they offer services that patients/consumers want such as appointment scheduling, prescription refill requests, etc.
- Leading CIO who is also actively involved in HIT policy development.
The only people who care about a PHP, PHR, whatever you wish to call it are those who are struggling with a life-changing illness.
- Co-founder of leading site for those with serious illness to gather and share experiences.
Chilmark’s thesis is an amalgamation of the last two statements (we’ll get to the first one shortly).
By and large, people do not care about their healthcare until they have to, either for themselves or a loved one. Even then, if they are very sick, it may be far more than they are capable of to set-up and maintain a PHP. These systems are still far too hard to create and manage, let alone trying to get doctors and hospitals to feed complete records and updates into them in some automated fashion. There may be an opportunity in providing a system for baby boomers to help manage their aging parents health issues from afar. We have yet to find a PHP, PHR, whatever you wish to call it that ideally fits this market need and may be an opportunity for an enterprising entrepreneur. Continue reading “Musings on PHRs & Consumer Engagement”
Filed Under: Electronic Health Records, Pharma
Tagged: EHR, John Moore, Pharma
May 16, 2011
The United States, of course.
Oh, no, wait, it’s Canada.
Actually, I think it could be Germany.
Geez, now I think it might be the UK.
You could go on and on like this. But you know what?
No matter how good or bad your system is, there are certain universal truths.
Here are four of them that might make you look at global health care a little differently.
First, health care is getting more expensive, all over the world. A new study by the global consultant, Towers Watson (disclosure: Towers Watson is a Best Doctors client) found that the average medical cost trend around the world will be 10.5% in 2011. In the advanced economies costs will rise by an average of 9.3%. While Americans tend to think of rising medical costs as a uniquely American problem (they’ll rise by 9.9% here), it’s just not true. Canadian costs will rise by 13.3%. In the UK and Switzerland, they will increase by 9.5%, and in France by 8.4%.
Continue reading “And the Worst Health Care System in the World Is…”
Filed Under: OP-ED
Tagged: Costs, Evan Falchuk, Healthcare systems, International, Pharma
Apr 21, 2011
“The mind leans over backward to transform a mad world into a sensible one, and the process is so natural and easy we hardly notice that it is taking place.” Jeremy Campbell
On the same day in November, headlines from the Wall Street Journal and the New York Times reported on the same story about a federal panel’s recommendations on consumer intake of vitamin D.
“Triple That Vitamin D Intake, Panel Prescribes” read the WSJ story;
“Extra Vitamin D and Calcium Aren’t Necessary, Report Says” stated the New York Times. (http://ow.ly/3tJMe) Since I had recently started taking vitamin D daily, I was interested in what the experts in Washington, DC were recommending.
How should you decide what advice to follow about the relationship between your diet, lifestyle, medications, health, and wellness?
Is this just another example of how the media does a terrible job? Many of us resonate with the view of media watchdog Steven Brill who said, “When it comes to arrogance, power, and lack of accountability, journalists are probably the only people on the planet who make lawyers look good.” (http://ow.ly/3tKdM)
The media does play a role here and needs to improve, but it turns out that it is really complicated to figure out what the “truth” is about diet, exercise, medicines, and your individual well being. Everybody (journalists, government panel members, scientists, patients, physicians, and nurse practitioners) needs to change.
Continue reading “The Difficult Science”
Filed Under: OP-ED
Tagged: Kent Bottles, Media, Medical studies, Pharma, Research
Dec 25, 2010
Media coverage of the government’s new investment in comparative effectiveness research leans heavily toward the effects of such research on new drugs and technologies: Will such evaluations lead to restricted access to the latest innovations? Will insurance no longer cover a drug that might give my aunt another year to live? Will such research hinder the development of a drug that could cure my nephew of type I diabetes?
The focus on how results from comparative effectiveness research might affect new approaches obscures for the public and for policymakers the vital role of such research in evaluating current approaches to diagnosis and treatment that may not only be ineffective but in fact harmful to us.
I am now slogging through chemotherapy for stomach cancer almost certainly caused by receiving high doses of radiation for Hodgkin lymphoma, which was the standard treatment until long-term side effects (heart problems, additional cancers) emerged in the late 1980s. So I am especially attuned to the need for registries and trials to track the short- and long-term effectiveness of treatments.
So choosing a surgeon in September to remove my tumor shone a bright light for me on the importance of research to evaluate current practices. Two of the three surgeons I consulted wanted to follow “standard treatment procedures” and leave a six-centimeter cancer-free margin around my tumor. This meant taking my whole stomach out, because of the anatomy of my stomach and its arterial supply.
Continue reading “More Can Also Be Less: We need a more complete public discussion about comparative effectiveness research”
Filed Under: Uncategorized
Tagged: Comparative Effectiveness Research, Patients, Pharma, Physicians
Dec 9, 2010
In the spring of 2005, the sinus infection returned. I awoke severely congested with a pounding forehead and pain around my eyes that grew worse when I bent to tie my shoes. The feeling was familiar. Two years earlier, I had similar symptoms, but was uninsured and endured a miserable week with nothing but over-the-counter medication. Now they were back.
Fortunately, when I started graduate school, my father insisted that I have health insurance. As a healthy 24 year old, I didn’t see the need, but he agreed to foot the bill for a high-deductible insurance policy to cover me in the event of catastrophic illness. Except for four physician office visits subject only to a $35 co-payment, my policy offered no benefits until I spent $3,000 out of my own pocket. With my sinuses throbbing, I knew I needed to use one of those visits. Overwhelmed by the list of “in-network” providers on the insurer’s website, I picked an internist based on convenience—his practice was located in a medical complex near my home.
Arriving for my appointment, I checked in and presented my insurance card to the receptionist. “Your visit today will be $35,” said the woman behind the desk. I was relieved to hear that my coverage was working as promised. A nurse ushered me to an exam room, where the physician promptly entered, half-heartedly listened to my complaint, and confidently asserted that I did not have a sinus infection because I had no fever. I wanted to say “Really? Mind handing me a tissue so that I can show you what’s been coming out of my head?” but resisted the urge. Instead, I clarified that fever or no, I didn’t feel well, and believed my sinuses were the culprit. At this, the internist lost patience. He ordered some lab work and a sinus CT scan to rule out infection, and said that I could have everything done downstairs. Continue reading “Blood Test Surprise”
Filed Under: Costs of Care, The Insider's Guide To Health Care
Tagged: Brad White, EHR, Insurance plans, Patients, Pharma
Dec 3, 2010
The latest analysis of health care reform – out this week from bean counters at Medicare – shows reform will raise health care spending slightly over the next 10 years, not reduce it as promised by President Obama. That won’t make selling it on the stump any easier. Yet there’s a glimmer of hope in the out years of the 10-year projection that the plan will begin to “bend the cost curve.”
Here’s the real bad news for reform supporters. The private insurance market will absorb most of the increase, and most of that will fall on individuals. Employer contributions for their workers’ private insurance will actually fall $120 billion in 2019 from previous projections because of reform.
Individuals will get hit two ways. First, the actuaries at CMS are projecting a huge 9 percent increase in out-of-pocket expenses in 2018 and 2019, after the so-called “Cadillac tax” goes into effect. This is a steep excise tax on high-cost insurance plans. To avoid tax penalties, experts expect employers with such plans – which may only be high-cost because they are filled with sicker and older beneficiaries – will reduce coverage by increasing co-pays and deductibles.
A second factor driving out-of-pocket expenses higher for individuals under reform will be the insurance mandate, which will drive many people to seek coverage through the new state exchanges. CMS predicts over 30 million people will be getting insurance through the exchanges in 2019, substantially more than the 24 million projected by the Congressional Budget Office last March, when reform passed.
Continue reading “Consumers to Pay More Under Reform”
Filed Under: Merrill Goozner, Superhealthanomics
Tagged: CMS, Costs, Medicare, Pharma, The Affordable Care Act, The Cost Curve
Sep 10, 2010