Who Are These Guys? Why the PCORI Picks Matter a Lot More Than You Probably Realize.

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.I’m a Maryland native, and I’ve never heard of Elkridge, a small community in Howard County whose attractions include proximity to “the world’s largest multiple arched stone railroad bridge with an arc.” But why appoint Ms. Collins as representative of patients and caregivers and not, say, O.P. Ditch, another Elk Ridge resident who is also an active member of the Howard County Tea Party Patriots?

After some diligent Googling, I think I know why Ms. Collins was named. She is an accomplished African-American woman, an attorney, vice president of policy and programs at the Asthma and Allergy Foundation of America and a lecturer at George Washington University. (That’s from her LinkedIn profile.) In contrast, I doubt the Tea Party Patriots include many PCORI supporters among their number.

The point, of course, is that Ms. Collins’ appointment has nothing to do with where her home is located. PCORI’s providing the public with random names (like advisory panel member “Mark Johnson”) attached to residential addresses, as opposed to providing all genuinely relevant information, is somewhere between meaningless and misleading. It certainly does not constitute a genuine disclosure of which people connected with what organizations (or no organization at all) secured which seats on panels that will be influencing who gets a seven-figure PCORI check.

Full disclosure of my own: I applied for the patient engagement panel, in part because of my role as president-elect of the Society for Participatory Medicine, but I wasn’t chosen. However, while my curiosity about who was selected has a personal element, it’s a minor one. When a panel member is listed as representing the pharmaceutical industry, I’d like to know, and the public should know, which company they represent – one with branded drugs or a generic manufacturer? – and what that individual does for a living – scientist or lobbyist? It’s important to know whether a representative of “clinicians” is a doctor active with the American Medical Association or, as appears to be the case for one panel member, a student studying rehabilitation therapy. And, most important, who was chosen to represent “patients”?

The PCORI staff seems to be filled with earnest, do-gooders. (See my post a few months ago on PCORI “goo-goo’s” for more on that theme.) Perhaps they decided that the Jane Smith who is a patient activist should be indistinguishable in her plain-Jane listing from Jane Smith, MD, PhD, medical school professor.

But PCORI isn’t a church, where all are created equal in the eyes of God, but a politically created, politically governed, controversial dispenser of a very large amount of money that a host of interest groups would like to control. PCORI staff chose the panel members in part by looking at their affiliations, and those connections (or lack of them) should be an immediate part of the public record when the appointments are announced. By being vague, PCORI obfuscates political and power relationships and makes it more difficult for the public and industry stakeholders to either approve of or criticize those choices.

So here’s the test: if PCORI’s vagueness stems from do-gooderism or a lack of public relations polish, all the organization has to do is take the information it possesses on panel members and immediately share it. Make the website transparent and useful. It’s that simple, and readers of this blog can click on the PCORI home page to see whether it happens.

I’m sure Elkridge residents Charlotte Collins (here’s a photo of her at a National Allergy Control Initiative meeting) and O.P. Ditch (here’s a picture of him leading the pledge of allegiance at the Howard County Republican Headquarters opening) would both agree.

Michael L. Millenson is president of Health Quality Advisors LLC in Highland Park, IL; the Mervin Shalowitz, MD Visiting Scholar at the Kellogg School of Management; and a board member of the Society for Participatory Medicine.

14 replies »

  1. Julie: I’m sorry you felt attacked, Julie, because the article was very clear about its target: PCORI. I was not questioning your credentials or those of anyone else. And, in fact, since you and I have crossed paths a number of times, I have a great deal of respect for your work.

    What the article said was wrong was PCORI putting out a bunch of names WITHOUT any information, like what you provided above. If you name an advisory panel, you need to do more than provide names and home towns and a vague category of stakeholder. That’s not transparency. And there is a potential conflict of interest because it is an advisory panel; not the same as a judge, of course, but if you represent “consumers” because of a personal experience but your paycheck comes from a drug company, that’s relevant. It may not affect your judgment, but it’s still relevant.

    PCORI responded to my criticisms a few days later by releasing the information I’d asked for.

    I’m glad you’re involved. But I’m also glad that PCORI and you are making clear why you deserve to be.

  2. Michael…Since you mentioned me in your previous article and questioned my role as a patient/family leader, I just wanted to respond to let you know that I am indeed a family leader. In overseeing the care of my child, who had 12 heart surgeries and a heart transplant during his 14 years of life, it was because of my experience—and knowing that I could make a difference in health care—that I devoted my time as a volunteer family leader for five years before I was asked by my health system to serve as a hospital director for six departments serving patients and families. After my son died at age 14, I was asked to be a family voice and work with the leading national organization for patient- and family-centered care. After nearly seven years of working in this capacity, I was offered the opportunity to represent the voices of patients and families at another academic medical center. I am very proud to have this opportunity to advance the practice of patient- and family-centered care alongside this forward-thinking organization that values patient/family participation. Just wanted to share that.

    I can appreciate your concern regarding conflict of interest but I must say that I’m not really sure I understand this concern given that the advisors don’t grant the awards.
    …Julie Ginn Moretz (formerly of Augusta, GA), Little Rock, AR

  3. PCORI has now amended its press release on the four panels to include affiliations.

    On the patient engagement panel, here’s some of what we learn: Stephen Arcona of East Hanover, NJ is representing patients, but unlike Ms. Collins of Elkridge, MD, who I blogged about above, either he didn’t give his home address or he lives above the store. The store, in this case, is Novartis Pharmaceuticals of East Hanover, NJ.

    In other words, the original listings were not just devoid of needed information, it was misleading. Some home addresses, some business addresses.

    In the new list, we also see Marc Boutin of Washington, DC — maybe he lives there, maybe not. But he’s representing patients, and he’s an executive of the DC-based National Health Council, a consumer organization heavily dependent on pharmaceutical company funding. At a recent meeting I attended in DC, their exec director spoke of patient compliance with meds as one of THE most important issues, and they’ve certainly tried to address that.

    Here’s Mr. Arcona’s listing with affiliation:

    Stephen Arcona, MA, PhD—East Hanover, NJ
    Executive Director, Outcomes Research Methods & Analytics, Department of Health Economics and Outcomes Research, Novartis Pharmaceuticals Corporation.
    Representing: Patients, Caregivers, and Patient Advocates

    Mr. Arcona, I hasten to add, could be the best patient advocate ever given his educational background and insider knowledge of the drug industry — I have no personal knowledge about him and presume he was attracted to PCORI because of personal issues. So, good for him.

    And Mr. Boutin may be a wonderful individual personally. But the Society for Participatory Medicine, as well as several other groups I could name are orders of magnitude more representative of engaged patients and caregivers than the National Health Council. Albeit politically less beneficial a choice to PCORI.

    Not that I know what influenced PCORI staff in their picks. Just sayin’

    Glad that PCORI chose transparency.

  4. So the actual annual spend is even smaller than the billion dollar headline would suggest – that’s what I figured and it will make it even harder for PCORI to have a real impact, when NIH’s SPEND is $30 billion in a year.

  5. LOL. You might suggest that. Previously, on their site, a doc listed himself, with the bio something like: “I am a patient masquerading as a doctor.” I don’t see his name now, but he is a nice guy. But nice guys are not what is going to advance patient-centered work. Maybe the whole field needs an outside mediator.

  6. Laura, if the “Patients Association” thinks its OK for providers to represent patients, can I move there and get on the board of the Canadian Medical Association? I promise to think like a doctor.

    By the way, to clarify on PCORI spending: several hundred million in any one year, a billion dollars over a multi-year period. And Steve, I think you’re spot on about PCORI needing “consistency.” I, too, am outside the Beltway.

  7. Yes, I believe that there is a problem. I wrote a post about PCORI’s Asthma/Diversity meeting, which not only was tilted to traditional stakeholders, but the two patient spokespeople seemed peculiar. One was from Susan B. Komen Breast Cancer Foundation, her major claim to fame. A year or two ago, her son got asthma. I think that there is a fundamental problem locating patients who are first and foremost patients. This is not limited to PCORI. Heck, the Patients Association of Canada has a Board of Directors where at least it states transparently: “Healthcare professionals sit on our Board of Directors, but they are patients and family members first.” The concept of a patient that matters is so threatening that nobody wants them around. My two cents.

  8. Having attended PCORI’s October Workshop for Key stakeholders and subsequently become a PCORI patient grant reviewer (without portfolio) my impression is that PCORI has a long long way to go when it comes to interacting in a consistent, meaningful and positive fashion with key stakeholders outside the beltway. I am in CA so image how engaged I feel.

  9. Thanks for raising this issue. It does seem reasonable to me that brief descriptions that included the roles, relationships, and experience that made applicants successful in the review process should have been available at the time of their announcement. If those characteristics need to be “confirmed” as Mr. Silberg suggests, perhaps the review process might also need to be confirmed?

    However, I would also like to suggest that while a billion dollars is a large amount, in the context of national health care research spending it is actually fairly small. The NIH budget request for 2013 is $30.6 BILLION, so another billion on top of that is about a 3.3% increase in spending – about as much as the inflation adjustment that NIH DIDN’T get between 2012 and 2013. Or alternatively it is just a little bigger than the cash the Center for Medicare and Medicaid Innovation put in to its Innovation Challenge grants program (~$800 million) So for all it sounds big, unless we are all very lucky, PCORI’s research investment could go into the health research industrial complex with barely a ripple.

  10. I don’t believe the individuals picked necessarily have a conflict of interest. I do believe that it should be disclosed, when the press release of the names is issued, exactly what interest groups are represented. If all the “clinicians” were doctors, with no nurses, that would be of interest. If all the “patients” represented interest groups and none were independent, that would be of interest. I’m sure those extremes aren’t true, but since the decisions were made by PCORI staff, a disclosure of affiliations would let the public/press/interest groups judge.

  11. Thanks for drawing attention to the Patient-Centered Outcomes Research Institute’s inaugural advisory panels. Establishing these groups is a key piece of our ongoing efforts to engage stakeholders from across the healthcare community in the process of guiding our work.

    A point or two of clarification given the concerns your blog post raises. We’ve always intended to post all 84 panelists’ biographies on our website, for the very reasons of transparency and context that the post mentions. We’ve been compiling these bios and working with our panelists to confirm their information and affiliations. We’ll post the complete lists as soon as we have them, as noted on the various advisory panel pages on our site. Watch this page for links to the updated lists: http://bit.ly/WN0IO3.

    In addition, as a Frequently Asked Questions document on our site indicates, all PCORI Advisory Panel members must abide by our Conflict of Interest policies. You can read more about that, and see other FAQs, here: http://bit.ly/14ltBaW. You can also read about how we selected the panels, and see the makeup of the applicant pool and final panels, here: http://bit.ly/XTFthC.

    If you still have questions about our advisory panels or anything else we do at PCORI, please feel free to email me directly at bsilberg@pcori.org.

    Bill Silberg
    Director of Communications

  12. I hope that these panel members understand what conflcts of interest are, given that they have not been burdened with having this links publicly disclosed as part of their appointment process.

    Given what we see in the health care industry, chances are that the majority of panel members are there to represent the interests of a narrow constituency (who pays them well for this advocacy) and not the public interest. True “volunteers” are tough to find !

  13. wow. this is a pretty serious pr blunder.

    ‘cmon guys!! what are you thinking???