Agency seeks *patients*(!) for Patient Centered Outcomes project. Too few are stepping up! (You??)

Corrections 8:45 pm ET Monday 10/24:

  • This post’s title originally said HHS was seeking patients. Actually it’s PCORI, a new non-government agency, as described below. Both affect the future of healthcare, but PCORI isn’t part of HHS.
  • The title also said “None are stepping up,” which disrespected those who had. “Too few” is better. As this post shows, there will be a lot of work to do, so a lot of us should get involved.

SPM member Sherry Reynolds brought this to my attention. It’s a call for citizen participation in reviewing grants next year.

The deadline is NOON Wednesday Oct 26 (EDT). And the application process is intentionally SO-not-Washington: it’s a one page form

This is about a key part of America’s healthcare overhaul – shifting our research to be more focused on what patients want, and shifting our healthcare practice to be driven more by what patients want. There’s a new research institute for Patient Centered Outcomes – PCORI, and:

  • Next year they’re accepting grant applications. These applications get reviewed; some are chosen, some are not.
  • This time, they’ve asked for “non-traditional” (i.e. ordinary citizen) people to participate in reviewing the grants.
    • That’s really important: the government is taking this grant process out of the “echo chamber” of the DC beltway. They’re inviting us to say what we want.
    • It’s especially important, because these grants are for work about patient centered outcomes.
  • BUT HARDLY ANY CITIZENS HAVE APPLIED. They want more. (You! Us! Me!) (Yes, I’m applying too. Join me.)

It’s simple: a brief form, plus uploading a short statement (Word file) about which area interests you. (See list below.)

Finances:

  • You have to attend a one day training in Washington [DC], next February. Expenses are covered, plus a token honorarium (fee) of $200.
    • Addition: see comments for discussion of whether remote participation might be possible, for applicants who can’t get to DC.
  • If you’re chosen, the work itself (reading & commenting on grants) will be unpaid. Your “reward” is that you get to influence national policy! Directly! At last, Washington will be listening to you. :-)

So here’s what you do:

  • Read the quick list (below) of the eight areas of interest.
  • Get two documents, to upload:
    • Your current CV / resume. Don’t kill yourself over this.
    • Create a short statement (in Word or text, 1 page or less) of which area(s) interest you.
  • Fill in the form

Do not be stopped by thinking “I don’t have fancy credentials”! This is for ordinary citizens. They’re just asking that stuff – you don’t need straight A’s.

e-Patient Dave
SPM Chair and rabble-rouser

The areas where PCORI will be accepting grant proposals: (These are my simplified paraphrases – the full text is here.)
For which might you have opinions??

  1. Establishing priorities for patient-centered outcomes research. (“That one would be stupid – this one’s more useful for real patients.”)
  2. Methods for bringing together patients, caregivers, clinicians, and other stakeholders in research, including training in participatory research
  3. Patient-centered approaches for translating evidence into health care practices that account for individual patient preferences for various outcomes.
    1. This may include how to publicize research findings in patient-friendly ways.
  4. Identify gaps in awareness of treatment options (for both patients and providers) — especially for vulnerable populations (low-income, minorities, etc)
  5. Outcomes instruments – tools to:
    1. measure or predict outcomes of interest to patients,
    2. standardizing measurement of patient-reported outcomes across a variety of interventions and populations.
  6. Methods to assess the patient perspective when researching behaviors, lifestyles, and choices within the patient’s control that may influence their outcomes. (“Are we thinking about this from the patient’s point of view?”)
  7. The care team’s interaction when multiple options exist, especially strategies that respect patient autonomy and promote informed decision-making.
    1. As we’ve written here many times, shared decision making moves us away from informed consent (where the docs decide and you sign), to informed choice, where you’re shown the range of options, with trade-offs, and you choose. This area is about how the care team interacts with patient and family.
  8. Advancing analytical methods. (For geeks only. You know who you are.)
Okay, pick one or more. Go. Thanks!
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Comments

28 Responses to “Agency seeks *patients*(!) for Patient Centered Outcomes project. Too few are stepping up! (You??)”

  1. kgapo says:

    Dave, I think you have written a great post simplifying administrative jargon! I am sure your post will speak to more volunteers than the official announcement.

  2. kate says:

    Hi, I am a brain tumor (5 surgeries and radiation) patient who would love to participate. But, travel to Washington for training is not feasible. It also seems to me that patient participate will be skewed to those who, a) live near Washington; and b) are well enough to travel to Washington. Not very representative of the global patient population. Would have been nice if the training were also provided online for those interested but unable to travel. That is an untenable trip for those of us who are truly sick, and I am only 3 hours away (each way). If you decide to video the training and put it online and open participation to folks who are anywhere in the U.S. and do the training online, then count me in! Thanks for considering this important suggestion from an otherwise perfect candidate.

    • e-Patient Dave says:

      Hi Kate!

      Re the requirement to travel – I know what you mean, because those are the issues I faced when I wanted to start participating in DC discussions. It took AGES to get people to be aware that patients don’t work in the industry (duh) and usually have financial distress (duh), so unlike the usual voices, they/we can’t just slot something in our schedule and hop a jet to be at the table.

      Similarly, we have a long way to go but some conferences are starting to provide funding. In the DC policy situation a just-as-big hurdle is the cultural change of WANTING patient voices and seeking them. On that one we seem to have made the first crack.

      In my experience even some of the best-intentioned policy people are so accustomed to “thinking Washington” that they don’t yet realize patients’ practical limitations, and are happy to wake up and rethink. Not always, but it’s our job to start the process.

      A few thoughts:

      1. If we are to be thought leaders on engaging patients, we need to lead the way, by speaking up (which y’all are doing) and telling each other what’s going on (which Sherry did).

      2. Then we need to give feedback to the establishment. Sometimes it listens, sometimes it doesn’t at first. But this is how it starts.

      3. Whoever gets chosen will probably be allowed to discuss the proposals with others – this is, after all, a public taxpayer-funded activity. I know on the occasion when SPM members have spoken in DC or written SPM policy letters it’s been discussed on the listserv or blog.

      So:

      If I were in your shoes – not able to travel but plenty able to read, think, and write – I’d apply, saying at the top of my one-pager “I am requesting an exception to the travel requirement. I strongly believe that I’m well qualified to perform in this volunteer role, but like many ‘experienced’ patients am not able to come to DC for the training. Perhaps I can be included by webcast, or get the training by some other means. Please consider my strong qualifications, in these areas of interest:”

    • I have experience in reviewing and writing clinical research papers and have written a handful of grants. I am an empowered patient and encourage others to be empowered. But, like some others in the group, travel to Washington, DC, is problematic at best due to Parkinson’s disease. Maybe we could team up with an able-bodied colleague and split the duties.

  3. kate says:

    I meant “patient participation” in the third line.

  4. Eve Harris says:

    DONE !
    thanks for the push, y’all

  5. […] e-Patient Dave has a great, non-technical breakdown of the easy application process. […]

  6. Elaine Finn says:

    Thank you, David, for clarifying the PCORI call for stakeholder reviewers. I looked over the information back when it was initially posted via SPM but apparently erroniously concluded they were looking for patients with a high level of scientific/academic research proposal experience. Now I see that the lottery ad jingle applies here: You can’t win if you don’t play! Application submitted.

  7. Thanks for cross posting this Dave for me.

    Just so everyone knows – this isn’t “HHS” but a new national public private non-profit that was set up under the healthcare reform bill – it is called PCORI – the Patient Centered Outcomes Research Institute not HHS.

    • kgapo says:

      As to me this move to call patients to sit at the table appears as a decisive shift that will find followers, I thought of posting it to the CCnet-The Cochrane Collaboration Consumers Network for the attention of US members. I am a member of the Network for Breast Cancer and Shared Decision Aids groups with global membership. The Network includes consumers that is patients, doctors, carers, family, nurses, etc. who among other do peer review of medical papers, medical policy issues.etc.
      I am sure that US Cochrane members of CCnet will apply if they get the message.
      FYI the only other countries that I know where patients sit in policy bodies are Australia and Sweden. Does anyone know of others? It would be good to share experience with patients sitting in policy bodies from these countries (I have breast cancer contacts from these countries…)

    • e-Patient Dave says:

      Sherry,

      > not HHS – a new non-government organization

      Thanks… please explain, how can legislation create a non-government entity?? I have a vague feeling that other things we know about are in the same category, but I don’t recall which.

      Does PCORI have no structural connection with the government? Is the government required in any way to heed what PCORI says?

      More questions to follow.

      • sherry reynolds @cascadia says:

        I am not a legislative analyst but PCORI was created through the Affordable Care Act (Subtitle D), as “an independent non-profit” The National eHealth Alliance which receives all of its funding from ONC is similiar but it is a public private “partnership” vs an independent non-profit so this is a new model.

        The Act directed the Comptroller General to appoint 19 of the 21 members of the PCORI Board of Governors. In addition to these 19 members, the Director of the Agency for Healthcare Research and Quality and the Director of the National Institutes of Health, are the other two members who serve on the PCORI Board and , the PPACA law gives preference in contracting for the research to AHRQ and NIH

        All of their funding will come from a surcharge on public and private insurance so some people are concerned that their existence is at risk if the super committee or a new administration wants to cut their funding stream.

      • sherry reynolds @cascadia says:

        FYI other similiar orgs? As far as I know this is the first time an independent non-profit was established by legislation but staffed by a govt body.

        When we stood up (I served on the governance committee as well as the board of directors selection committees) up the National eHealth Collaborative (NeHC) for ONC it became a a public private partnership va an independent non-profit.

        FYI – NeHC was originally constructed with a membership based financing model but they never implemented it. As a result its only source of funding remains a couple of million from ONC. Its purpose was largely replaced by the policy and standards committees (which also have million dollar budgets).

    • The joke’s really on me – PCORI’s “About” page says what Sherry said: a non-government agency. (This is what I get when I decide to opt for action (get something posted), because otherwise I tend to delay for ages and nothing gets done.)

      It says:

      • created to conduct research to provide information about the best available evidence
      • to help patients and their health care providers make more informed decisions.
      • to give patients a better understanding of the … options available, and the science that supports those options.
      • committed to transparency and a rigorous stakeholder-driven process that emphasizes patient engagement.

      I’m starting to see why people have been saying for the past year that SPM ought to be all over PCORI – its purpose and what it’ll be doing. I wish we all collectively had figured it out, and I’m sure glad it’s coming to our attention now!

      Seriously, you who have been interested in this post, read that “About” page and click some of its links!

  8. Thank you for the notice! I applied to represent patients with failed implanted medical devices. Joint replacement is the #1 expenditure of Medicare but the FDA charter restricts Patient Representatives from being full voting stakeholders. There is no post market registry. For the patient, device failure is medical & legal purgatory.

    • DCpatient says:

      Joleen, I share your frustration that the patient representatives on the device side are not given the same voting rights as patients serving on advisory committees for drug approval. My understanding is that this is a legislative disparity that requires a Congressional fix, rather than something the FDA has the authority to change through its own regulatory processes. I think this would be a great opportunity for advocacy by medical device (and all patient) advocates.

      On the prevailing topic, I do encourage everyone to spread the word about the PCORI grant review opportunity and to take part of an hour today and apply yourself.

  9. Monica says:

    Dave and/or Sherry, do you know where I can find a description of what the actual work would entail? What kind of time commitment will this look like? This is a great opportunity and I’d love to participate, but I don’t want to over-commit myself.

  10. Jill Plevinsky says:

    Hey Dave,

    Just finished my application.. thanks for publicizing this. Such a meaningful movement happening! Glad to be on board with you.

    Fondly,
    Jill

  11. Laura says:

    Just sent in my application. I don’t have any grant experience, either writing or receiving, so fingers crossed.

    Thanks for letting us know about this opportunity!

    -Laura
    @ncscadsurvivor

  12. e-Patient Dave says:

    Surprisingly (not), I just submitted my OWN application, a mere 5 minutes before the deadline.

  13. I applied and finally got a message back from PCORI, though it is neither a yes nor a no response just “will notify you when a decision is made for specific study groups.” A fellow applicant got a message back saying yes and yet another said she was “wait listed.” I’m not sure what to make of the response I received.

  14. DCpatient says:

    Thanks in no small part to Dave’s effort here, reports are that there were a great number of applicants for the grant review committees. If I may speculate about the different responses people are getting (1)remember PCORI is still staffing up and relying predominantly on outside contractors for a lot of the work which may produce inconsistencies and/or (2) they may be trying to balance the stakeholder groups and backgrounds/experience of each panel so that acceptance or wait list may be dependent on the characteristics of the entire pool of applicants and trying to achieve that balance.

  15. […] After all, if we’re trying to get to patient-centered outcomes….LET PATIENTS HELP! The Society for Participatory Medicine (SPM) and others should use PCORI as an opportunity to be loud & clear about this. This is […]

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