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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