Project Overview +

This community-based participatory research collaboration seeks to develop and evaluate a meaningful mechanism for engaging the public, particularly minority and underserved communities, in informed deliberations about patient centered outcomes research priorities. Results of those deliberations and the tool itself could enable funders, scientists and communities to incorporate public input in research funding allocation decisions.

Aims +

Aim 1: Develop content for a prioritization exercise for patient-centered outcomes research (PCOR) priorities.

Aim 2: Evaluate a deliberative exercise designed to engage minority and underserved communities in setting PCOR priorities from the perspective of the participants.

Aim 3: Describe the PCOR priorities of communities, particularly minority and underserved communities, and explore possible differences between subgroups' views and participation.

Participants +

We convene 12 (6 each at UM and WashU) groups of 9-15 persons (N=144) to participate in PCOR priority-setting deliberations, oversampling minority and underserved communities and those with experience of a chronic or serious illness in the family. Substantive representation draws a range of interests into the decision-making process, paying particular attention to representing interests that are frequently overlooked, as some groups have influenced decisions all along. Emphasizing and oversampling underrepresented groups allows them to provide crucial insights that challenge prevailing assumptions. Deliberators chosen by socially rooted groups are especially valuable since they have a defined constituency to whom they are accountable, and because existing groups’ organizing capabilities can increase the political power of individuals and bring knowledge and flexibility to decision making.

Intervention +

ReCHAT software includes the ability to modify content to meet a variety of prioritization needs. We will develop, in consultation with patient advocates, community leaders, outcomes researchers and funders, content specific to PCOR priority setting. Content (prioritization options and feedback) will have the following characteristics:

  1. Background information about PCOR, its goals, methods, costs and uses will be needed, since, unlike health care priorities, the setting of PCOR priorities will rarely be familiar to participants. Working with community partners, we will develop materials that will then will be thoroughly pretested to assure that information is credible and balanced, sufficient but not overwhelming, comprehensible but not oversimplified.
  2. Options, events and tasks in the priority setting exercise will be understandable and meaningful to non-scientists. The exercise, including description of possible PCOR priorities and their meanings, and the expectations and limits of the exercise will be developed with community partners and the DECIDERS Steering Committee, designed to avoid bias and pressure on participants while maximizing engagement, equal and respectful participation, and reason-giving.
  3. Options will reflect categories of research spending that decision makers find useful and meaningful, so that results from community engagement in priority setting can readily influence decisions. Yet this will be balanced by a need to present a wide range of spending options, not limited to those currently considered by funding decision makers, so that communities’ priorities are not constrained by the status quo.
  4. Feedback “events” will portray the possible consequences of various priorities in terms and vignettes that are logically linked to priorities, understandable, and meaningful. Events should portray consequences to individuals, groups and the population as a whole.

Re-CHAT

10/11/2012 - 07/31/2014

Sponsor(s)

Patient-Centered Outcomes Research Institute

Principal Investigator:

Susan D. Goold, MD, MHSA, MA