Beginning a series: SPM members’ thoughts on the PCORI workshop

PCORI logoAll: I’d like to collect a list of all blog posts about this PCORI weekend, from SPM members (our Society) and anyone else. Please write to, and disregard the auto-reply that you’ll get.

This post started as a prolog to Kelly Young’s upcoming post, but at some point a prolog needs to stand on its own.

Last weekend PCORI, the Patient Centered Outcomes Research Institute, held its first workshop on patient engagement in clinical research. It turned out to be a bold and, to some people (not everyone), sometimes a difficult endeavor. I think it’s important that we chronicle this transition, this cultural change – because that’s what it is: nothing less than a big-time cultural change. So everyone’s expectations about roles are subject to question and change.

(Review:) About PCORI

We’ve posted before about PCORI. Since its creation in the Patient Protection and Affordable Care Act (PPACA, “Obamacare”) PCORI has had some rocky times as the research establishment earnestly tries to learn how to think like a patient and with patients, instead of thinking about or for patients. Sometimes, patients have responded in ways that basically mean “Are you even listening??? Do you even know what our lives are like???”

This is a gulf, and the best way to cross it is to get together, in person.

Much to PCORI’s credit, for this event they invited patients to apply to be in the room, and even paid for their participation – a first, to my knowledge. In comparison, two years ago when several of us in SPM testified about Meaningful Use regulations, any time we contributed was donated (unpaid time off work), which is really hard when someone is already sick or trying to recover financially from illness. That’s one of the massive disconnects between real patients and well-meaning but healthy (unstressed) researchers or policy people.

About this event:

PCORI not only paid for travel, and paid for people’s time; they scheduled this two-day event on a weekend, so attending didn’t require taking two days off work (plus travel time). Never in my time working with people in Washington has anyone done that. Kudos, PCORI!  (And salaried PCORI staff donated their own weekends. Thank you!)

But then, the work started.

The central question, in my view:

I couldn’t attend – months earlier I’d been booked to be out of town – but on my own site I posted a question:  Who gets to say what’s patient-centered? (Hint: the one who’s IN the center). I said:

The maturing seems to parallel how a kid grows up:

  • A toddler is put in the back seat of a car and is taken where the parent knows they should go.
    • That’s straight-up paternalism: parent takes care of kid, who doesn’t understand the issues and can’t take care of self.
  • An older kid doesn’t need a car seat and may be asked “Where do you want to go?” from a parent-selected menu: playground? movies? beach?
    • That’s a bit of autonomy, with constraints defined by the caretaking / paternal parent who still has much better judgment.
  • At some point the kid is just asked “Where do you want to go?” or even “Where do you need to go?”
  • And at some point the kid (surely now an older teen) gets to set the agenda: s/he defines what’s important (their own priority), when to go, how to get there, what to do if the first choice doesn’t work out, etc. (And this role involves responsibilities as well as autonomy.)

My work on the advisory committee leading up to this event made me certain this was a key issue: for people inside the establishment, thinking about patients, it’s hard to imagine asking the patients themselves what they think is important. After all, research is about science, right? And who knows science better than scientists?

And that’s where it gets delicate: I think of the words of my primary physician, SPM co-founder and past president Dr. Danny Sands, who says: “I’m an expert in medicine, but patients are experts in their own bodies.” And, I would add, patients are the most experienced in defining what they think constitutes relief from suffering.

If we had an unlimited budget we could study anything, but we don’t. So, what should we study? Who should say?

What is, after all, a patient-centered outcome? Who gets to say?

The source of pain that surfaced this weekend

At least two SPM members who attended have already written about the weekend. Both felt absolutely stiff-armed at least once, as a moderator basically told them to stop taking the plan off track.

And to patient activists that’s a big problem, because although PCORI itself may not have “harmed” people yet (in this sense), everyone needs to realize that many many patients have indeed been stiff-armed too many times, told to be patient and polite, while healthcare has simply not gotten its act together and fixed the problems that keep killing patients, year after year.

(I’m fond of pointing out lately that at St. Joseph’s Hospital, in my town, during a relative’s hospitalization in December, I didn’t see a single employee wash his or her hands when entering or leaving the room, even though the patient had C.diff, a sometimes dangerous infection. And when I asked about hand washing I got a rude and ignorant response. Well, hospital, up yours. That’s how I feel: you’re dangerous, irresponsible, and uncaring. Who’s running this place?? Is that expected behavior and performance in your shop??)

And that’s not to mention the patients whose specialists have fired them for asking too many questions, or called them “Little Miss Type A Personality,” etc etc.

Everyone involved in this movement needs to realize how much pain some patients have endured. And it’s simply not acceptable to tell those people to sit down and be nice. There’s a whole lot of being heard that needs to happen first.

You may not have caused the problem, but the job you’ve taken on puts you in the front line, face to face with sufferers (and others).

Putting the weekend – and these blog posts – in perspective: the long view

Not everyone was happy about which patients got selected to attend, and not everyone who attended was happy with how it went. My personal opinion (not SPM’s) is that this is a sometimes-unpleasant natural stage of a culture change: it gets messy, and as I’ve been saying for years, it’s like teaching 8th-graders to dance: people step on each other’s feet. So as progress begins, some people get mad, some madder than others.

I hope all the parties will keep listening to each other and honestly expressing themselves. And I hope each will recognize that what looks like malice or rudeness may or may not be intended that way, and all will commit to the new world we’re trying to create. In this case that’s a blend of the best of the scientific method and culture, with the purifying addition of focusing on what the suffering people believe is most important.

As I say, PCORI leadership has given unprecedented support to patient participation. Patients, including unhappy ones, please realize this. I’ve met and talked with these leaders and they want the new world. But these are the clumsy days.

And PCORI leaders, Joe and Sue and everyone, please realize how much pain many patients bring, and that some may not realize yet that you are not their worst enemies, the worst of what they’ve faced. And it hurts when someone seems like the worst they’ve seen.

The work has begun. Let’s get to know each other and work together. As I say, this is our chance to bring together the best of what science has to offer and the improved focus the patient perspective can bring. This can be the fulfillment of the Affordable Care Act.

Three legged race

Source: tiswango

My personal opinion is that PCORi’s leaders are thinking right and moving in the right direction, but there’s a long way to go. I’m not asking for patience – I’m asking for understanding as we all commit to moving forward as fast as we can, together.

At one planning meeting someone suggested that an ice-breaker exercise could be to pair up researchers and patients in a three-legged race – nobody could win unless they figured out how to make progress together.

Listen to each other. Hear each other.

Do not suppress each other. Get to the future.


Posts submitted for this series:

  • Oct 30: Kelly Young, @RAWarrior. Kelly’s (IMO) a perfect example of a great partner for PCORI – a smart, scientifically astute, “actively sick” leader of a disease committee who wants to refocus not just research but how the medical community even thinks about the disease, for specific well documented reasons. She liked the workshop but feels she got stiffed when she tried to provide input social media.

Posted in: policy issues | pts as teachers | research issues




31 Responses to “Beginning a series: SPM members’ thoughts on the PCORI workshop”

  1. Kelly Young says:

    I agree that we cannot require patients and researchers to work together if we cannot first do it ourselves. We must learn each others’ language and practice the same respect and open-mindedness that we want to require of researchers who collaborate with patients.

    Note: My “we” is not patients / patient advocates; “we” is PCORI itself and all who are becoming part of this PCORI community.

  2. Bart Windrum says:

    For the not-totally-involved among us: what is SPM?

  3. Kathy Day RN says:

    I blogged about my PCORI experience on my webpage. My question is…why did PCORI pair each of us with a partner, and give us homework to do (4 questions that I spent an afternoon messing with) ahead of time. We either agreed or not to allow PCORI to use some of our responses during the event. Yet not one word was mentioned about the partnering, or the homework questions. And I talked to many who never met their partners face to face, only through email and on the phone. I was luck to meet mine in person and she was a wonderful passionate patient advocate. I think that our responses to those homework questions must have packed a wallop that we never heard about. I want to see some kind of compilation of those responses.

  4. Kathy’s post is good enough (a strong personal narrative of the experience) that I’ll paste in the last paragraph here. (And because short paragraphs get read more, I’ll break it into three.)

    “So, what do I do with my new contacts, energy, and information? I can train to become a research reviewer for PCORI, and I am considering that. I can and probably will come up with some challenging research questions. I will spread the word about PCORI by writing to my local newspaper.

    “But, what I want to do most is drive or at least be a passenger in the PCORI RV/bus. When PCORI decides to use my suggestion to do a nationwide PCORI tour to raise awareness of their work, and to hold town meetings about Patient Centered Research in every corner of the US, I want to be there.

    “My PCORI partner (chosen for me by PCORI prior to the meeting) had the great idea of town hall meetings, so maybe she can join me on that bus. Last night when I left, one of the leadership people told me the driver of the bus had to have a tattoo……it would be a first for me, but I am willing to do that to be part of the PCORI tour. That is how important I think their work is.”

  5. Mighty Casey says:

    Learning each other’s language is key, and in the middle of the learning the communication is always a total muddle. We’ll get there, and patience is indeed required.

    And, if there’s a PCORI tattoo initiative brewing, I’m happy to get more ink to sport our brand efforts.

  6. Bob West says:

    I did not attend the PCORI workshop, but from the tweets I saw and the blogs I read, and in reflection of today’s Twitter convo, I still feel it behooves the PCORI leadership to attempt to rectify the miscommunication with the invited patients. Getting off on a bad footing with the population you serve is no way to run a business. Patients themselves cannot control this, unless the patients themselves are running the business, which they are not.

    I appreciate the delicate position you find yourself in, Dave, as patient, patient advocate, and PCORI member, but upon perusing the entire set of leadership dossiers, it appears you’re a lone wolf in a lion’s den. I will say this as delicately as possible: you appear to be the “token patient/patient advocate”, which would simultaneously be an honor (for you) as well as disgrace (for PCORI). I’m willing to be told I’m wrong on this.

    As far as the languages of researchers and patients being different, I can identify with that issue, particularly since I speak both languages. But that’s not the problem I’m seeing here. The one I see is the perennial problem of lack of patient respect.

    It’s to your credit, Dave, that you are providing a platform to attempt to resolve such miscommunication issues. And I agree, these are the early days, and these issues are resolvable, if handled properly.

    – Bob

    • Just remember, all, that Twitter activists are a tiny tiny sliver of the total population, and there’s no way to know how much that slice represents the total. I’m keenly aware of that.

  7. Lkay54 says:

    As a webinar participant, I felt the discontent with the process for people not present in D.C. but still willing to invest their time by participating. Rather than feel acknowledged for our efforts, there were few nods that we were even in the room. I am familiar with PCORI, I applied to attend this workshop, I have submitted a research question/theme and am working with researchers for this round of grant proposals on our submissions.

    As I listened and watched the webinar, I continue to get the impression that the rules for this new game are being made up as the need arises. And the rules seem to be made by the usual power brokers and not in consultation with the patients. That is concerning to me because if we are to stop doing research the same old ways there needs to be buy-in of that concept by all the parties especially those who have the power on their side. It sounded to me in the Sunday discussions that the pts present were still trying to get their points heard, as if they had been talking to non receptive ears.

    I realize this is a beginning but after two years of groundwork, I had hoped the process would have been further evolved. Hurricane Sandy obviously derailed parts of the workshop flow. As seen during the storm, the use of social media has revolutionized the way we communicate. Reports came from ordinary citizens and helped first responders and others respond appropriately. The same is happening in consumer health care – social media is out front, hosting the talks and exchanging ideas freely. It was disappointing that @pcori made few attempts to engage with those of us using SoMe to attend.

    One final comment – I still want to see the list of attendees for the workshop and be able to identify the 75 patients who were supposed to be present . I find it a flagrant foul to consider people who are employed in the health care industry to be considered to have the same perspective on issues than those of us who do this advocacy out of our passion and not for our purse. Just sayin’

    Please excuse any errors, I am writing this on my iPad, autocorrect and all.

    • LKay,

      What – specifically – do you mean by “the usual power brokers”? I think I hear what you’re talking about, but I think we want to be careful not to create a vague impression without having something concrete attached to it.

      I wasn’t there nor did I see the webcast, so let me ask –

      1. Who are “the usual power brokers” in your view? Do you mean anyone specific, or a specific category, or do you just mean it didn’t seem like the discussion was being run with a new point of view – it sounded like a familiar Washington-style program?

      2. In the planning call some “real patients” expressed concern about being sure the schedule allowed time for rest between sessions, making sure they wouldn’t push themselves too much; PCORI arranged to have a nurse on-site. This itself was a solution derived during the call – at first someone suggested having an EMT there, but people agreed that would be a little creepy, and a nurse was viewed as a good solution. (I’d like to hear from folks there about how that worked out.)

      Note: PCORI WAS ENGAGED AND LISTENING AND HEARING. To what the PATIENT voice was expressing.

      3. I personally know two “real, actively sick” patients who were there – Perry Cohen (Parkinson’s) and Kelly Young. Each works WITH an organization (that they helped create), but believe me, each is 100% pure-fire The Patient Voice.

      Again, I’d love to see the list of people with their affiliations – that would be consistent with the total transparency of everything HHS has been doing.

      • Lkay54 says:

        By power brokers I am speaking of who controls the agenda – both for things like the workshop, the process and especially how the money is dispersed for research. The medical doctors and PhD researchers are interspersed with the consulting agencies and others who profit from this work. I’m not saying they should be doing anything for free, but for the sake of transparency, it would be appropriate to disclose all participants and their relationships. I also wonder, is Pharma in the mix with PCORI? Yes, I understand our government doesn’t fund the research so many of our causes need to find treatments and cures, and pharma is a necessary partner but I would have to do some serious thinking about my feelings if they are present in the room with PCORI. I hope this all makes some sense.

        Having this meeting in Washington makes logistical sense, but it is a town that has a history of saying what they think the constituents want to hear, while the reality is something different.

        You have a good understanding of the sense of betrayal/manipulation for profits many patients communities are feeling these days. Perhaps my frustration is a by-product of those situations in the MS/Pharma relationship.

        The big item that is bothering me is on Saturday, via Twitter, @PCORI responded to our request and said the list of participants would be made available on Monday. In this day of electronic files and transmissions, it shouldn’t take 48 hours to retrieve a list for us that was in every workshop participant’s folder. And now, almost 100 hours later, that list has still not been shared, unless I have missed it.

        Did anyone else note that several stakeholders at the meeting mentioned not having a telephone number for PCORI/asking for a number and the request being ignored? Surely with all the funds they have, someone has paid the phone bill.

        Thanks for telling us about the two examples of active patients, that is the type of information I would like to see shared to help establish a sense of trust.

        I don’t mean to sound adversarial to the process, I am all in favor of what PCORI was established to do in their mission. There just seems to be lots of questions and transparency is falling short.

        • Holy cow, LKay… I sure hear a pile of anger and suspicion. Understandable, but let’s try to only react to things that actually happened, not what might be happening, okay?

          Washington’s had its cesspool aspects but don’t forget that it’s also where every civil rights law and every other good thing has been passed.

          I saw someone complaining about no phone number on the PCORI website. What on earth is the problem, everyone? Do you not know how to google “pcori contact”?? Here, let me google that for you: Boom: phone number.

          As I say, I want good things to happen, but things like this make us look like idiots who complain instead of looking for an answer. Really, let’s be responsible, engaged, equipped, empowered, not kneejerk complainers. If we were this weak at seeking treatments we’d NEED hand-holding by professionals.

          Regarding not delivering the list: you may have noticed that a lot of DC was shut down due to the storm.

          In my several years (not many) working with people in this administration I’ve seen over and over, don’t assume conspiracy when something can be explained by simple workload or simply not getting the message. We need a spirit of partnership in all directions.

    • Lkay says:


      My thinking was this is a place to have an honest discussion, but comments such as ‘Holy cow, LKay… I sure hear a pile of anger and suspicion’ don’t contribute to the building of community here. I think I clearly spelled out my concerns and even said my comments were not meant to be heard as adversarial but I was shot down with the response I got. I believe you have put a lot of effort into the work with PCORI as the lone patient on the board to build this better mouse trap, and am not trying to demean the efforts.

      • LKay, we need to talk … what are you talking about, me being the lone patient on the board?? What on earth are you talking about?

        I’m not on PCORI’s board.

        If you mean the patient advisory group that participated in some calls before this event (we did NOT plan it), yes; but we’re ALL patients and patient representatives. I’m not the lone anything.

        I’m overseas so phone doesn’t work well for me until Nov 10 but if you’re on Skype, I’m “epatientdave” there; otherwise email me at dave at

        • Lkay54 says:

          My apologies for misunderstanding and mistating your role with PCORI. I thought from the comments from Bob West in the above discussion that you were closely aligned with PCORI.

  8. Kathy Day RN says:

    Dave, do you know if it is ok to publish the list of attendees with their contact info? I have that, but there are no identifiers…as to the hats they wore…ie. patient, patient advocate, consumer, researcher, provider (nurse, doctor, etc). And of course there were people there that wore multiple hats, like me. Nurse, patient, survivor of loved one who died of medical harm, activist, advocate, family caregiver. I think many who were there also wore more than one hat. How can we break it down?

    • Lkay54 says:

      Kathy, were there any plain old patients in attendance or was everyone attached to a group in some form or another? It seems reaching the ordinary person living with disease is the goal of PCORI but there didn’t seem to be many of these people included in this round.

      • I haven’t seen the list. It’s a public agency so I’m sure the list of attendees is open.

        It’d be a great idea to identify their affiliations! That would demonstrate how the process is working. I’m sure PCORI will be happy to do that.

        • Dear Friends,

          I did post a picture of the attendee list on the #PCORI twitter stream prior to their announcement they would post the list on Monday. So it should be still up.

          -Regina Holliday

        • Linda KEnney says:

          pcori asked permission to publish the list of attendees and asked for those who did not want their name list to let them know, which I believe is a respectful way. They plan to publish to the website. Remember, Sandy put a hold on things!

          I am affiliated with an organization that I founded in 2002, but make no mistake, I am still a “plain old patient” who still need many more surgeries, procedures, etc… Dave and I were both part of the working group assisting with the planning of this event and everyone involved wanted to make sure that we had patient’s perspective throughout the workshop.

        • Regina’s tweets are here, here, and here.

      • Kathy Day RN says:

        Yes, Lkay, there were plain old patients, I am both plain and old and I was a cancer patient. But, as I said in my blog, I wore more hats that my patient hat. Maybe most important to anyone here is that I am not paid by anyone for my activism/advocacy. I am a free spirit, an unpaid volunteer….although I affiliate with CU, NEVER (Northeast Voices for Error Reduction), Maine State Nurses Association, AARP, Maine Quality Counts, and others. I work as a patient, with patients and for patients. I’m a retired nurse and a family caregiver. I try really hard, as do my colleagues, to bring not only my own voice, but the voices of other patients (who are too sick and/or afraid to speak out, or don’t feel they have the power to do so) to conversations about patient safety and quality. I also speak for patients who are gone, because of poor quality and/or unsafe healthcare. My father is one of those patients, deceased because of a hosptial acquired infection. I think that most of the attendees would tell you that being a patient is not the only hat they wear….although patient centered care and their individual causes are of utmost importance to them

  9. I am an engaged patient advocate. I applied early for the meeting and was not invited. I participated by webinar and Twitter. Susan Sheridan says she is not familiar with the issues of harmed patients with implanted medical devices though I found an article stating that Joe Selby (ED of PCORI) and Jeff Shuren (FDA) have had discussions. InsiderHealthPolicy ‘FDA Pushes Device Surveillance Plan That Could Involve PCORI; Off-Label, Data Access Debated’ All my efforts to be included or know who is the responsive Patient Representative have been ignored or rebuffed. I am a member of S4PM, CU Safe Patient Project, attended a 9/2010 workshop for training FDA Patient Representatives and testified at two town hall meetings.

    • Thanks for your note, Joleen.

      What specifically do you mean by “ignored or rebuffed”? Do you mean you got no response at all? What is “rebuffed,” specifically, besides getting a no?

      Of course I’m not defending – I’m not in any position to – just asking for specifics. Too many emotion-laden words in this discussion. The emotion is understandable given what some of us have been through but progress requires clarity, specifics, not generalizations.

      Thanks in advance for helping clarify –

  10. […] in a series announced yesterday of posts by SPM members who attended last weekend’s PCORI workshop. This one’s from […]

  11. […] Next in our series of posts by SPM members on their experience at last weekend’s PCORI workshop. See Monday’s introductory post. […]

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