Friday, October 21

Patient Centered Design - Call for Patient and Patient Advocates to review Patient Centered Research

There is a really unique opportunity to include patients, patient advocates and care-givers in setting the national healthcare agenda via the new public private non-profit  Patient Centered Outcomes (PCORI) that was established by Congress through the 2010 Patient Protection and Affordable Care Act. It is an independent, non-profit organization governed by a 21-member Board of Governors.  – they have a call out for non-traditional reviewers – patients, care-givers, patient advocates and those who work for advocacy organizations.  The details are below my signature.

Please consider sharing this with your organization and or applying to be a reviewer or even applying for a grant yourself (you can do both). This is a unique opportunity to embed the patients voice in the national research agenda and everyone who knows me knows I believe it is critical to include not only patients but patient centered design principals at the policy, research and tools level in order to transform our healthcare system.

FYI - For those of you who aren’t as familiar with me I was on the ONC governance committee as a consumer/patient advocate that stood up NeHC and on the first two board of directors selection committees where we were able to include the patient voice by dedicating two seats on the NeHC board  I was also one of the driving voices behind ONC’s commitment to fund the consumer advocacy position last year. I am also on the advisory board for one of the Beacon Projects as well as the board of directors for HIMSS – WA – responsible for advocacy and I tweet a lil.


Sherry Reynolds | Executive Director | Alliance4Health |@cascadia

PCORI is unique in that their breadth is National but their focus is on patient-centered outcomes research. They aren’t simply giving lip service to “engaging” patients in research after the fact but embedding actual patients (along with the core value of patient centered design) in healthcare policy, research using a model that is similar to the one that I have been advocating for in health IT for the past few years.  One thing to note is that people can be on the review team and still apply for grants and participate in other ways as well they just have to sign a conflict of interest form.  

Here is a short version of the announcement:

The new Patient-Centered Outcomes Research Institute (PCORI) is looking for patients, patient advocates, care-givers and other health care system stakeholders to participate in merit reviews of the PCORI Pilot Project Grants Program applications in February 2012 but the deadline for grant reviewers is Wednesday Oct 26, 2011. The purpose of the reviews is to determine the significance and quality of submitted research proposals in one of 8 Patient Centered areas listed below. Each review group will include at least two non-scientist reviewers and it would be great if we could get as many patient and patient advocates involved.

By including non-scientific reviewers, including patients, patient advocates, caregivers, and health care clinicians or providers, we can ensure that the patient perspective is included in PCORI-funded agenda and research. Training on how to be a merit reviewer will be provided for those who do not have previous experience.  Training will be provided and there will be a one-day review group meeting in Washington, D.C., between February 13-24, 2012 but an honorarium of $200 is included along with travel expenses, including food, hotel, and transportation. Of course all reviewers will be required to complete a PCORI conflict of interest disclosure form but you can also still apply for grants.

This is really a rare opportunity to influence patient centered research at the National level.  Interested reviewers must complete and submit an online application form no later than 12:00 p.m. ET on October 26, 2011.

For more information and to apply to be a reviewer, please visit the following links:

Areas of Interest for the Pilot Projects Grants Program
The funding announcement for PCORI’s Pilot Projects Grants Program lists eight areas of interest. Projects eligible for funding under the announcement must address one or more of the areas, which are summarized as follows:
  1. Developing or evaluating methods (qualitative and quantitative) that can help establish national priorities for patient-centered outcomes research (PCOR). This may include research prioritization approaches for engaging patients or other stakeholders into the development of national priorities.
  2. Developing methods for bringing together patients, caregivers, clinicians, and other stakeholders in all stages of a research process, including methods for training participants in participatory research and new technologies to facilitate engagement.
  3. Developing or evaluating patient-centered approaches and decision-support tools for translating evidence-based care into health care practices that account for individual patient preferences for various outcomes. This may include models for disseminating research findings from the patient perspective.
  4. Developing or evaluating methods to identify gaps in comparative-effectiveness knowledge as perceived by patients and providers—especially gaps relevant to vulnerable populations, such as low-income populations, minorities, children, the elderly, women, and people with disabilities, chronic, rare, and/or multiple medical conditions.
  5. Identifying or evaluating patient-centered outcomes instruments, such as predictive tools that measure or predict outcomes of interest to patients, or tools for standardizing measurement of patient-reported outcomes across a variety of interventions and patient populations.
  6. Identifying or evaluating methods to assess the patient perspective when researching behaviors, lifestyles, and choices within the patient’s control that may influence their outcomes.
  7. Identifying or evaluating methods for studying patient care team’s interaction in situations where multiple options for wellness, prevention, diagnosis or treatment exist, especially strategies that respect patient autonomy and promote informed decision-making.
  8. Advancing analytical methods for comparative-effectiveness research (CER), such as incorporating mixed methods research designs (qualitative/quantitative), the use of instrumental variables, and potential solutions for assessing treatment heterogeneity in observational and randomized CER studies.

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