Engaging stakeholders in the research and development process

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Presentation transcript:

Engaging stakeholders in the research and development process Mary Anne Sterling Jim Mueller Mike Jones 202 Peachtree Road NW, Atlanta, GA 30309 Phone: 404-352-2020 shepherd.org Shepherd Center logo

Our Panelists Mary Anne Sterling Connected Health Resources @ Sterling HIT AD-PCPRN Jim Mueller JL Mueller, Inc. Wireless RERC

Patient engagement in healthcare Patient Engagement – actions people take to support their health and benefit from their health care. Center for Advancing Health (CFAH) Patient engagement … … improves satisfaction with treatment, adherence to treatment regimens, and health outcomes; … is key to transforming the health care delivery system ala “Obamacare.”

Engagement in research Consumer involvement a “core value” of NIDILRR; emphasis likely to grow under ACL Major tenet of PCORI (Patient-Centered Outcomes Research Institute) To ensure that research is relevant to patient needs, questions and concerns, patient engagement is a critical feature of PCORI- funded research. 2 of 5 evaluation criteria address patient engagement efforts in all aspects of the project.

Engagement in RERC R&D efforts?

Is stakeholder engagement important? Does it improve usability or the user experience? Does it result in products/services that better meet user needs? Does it improve user adoption, satisfaction, or the lasting impact of product/service? Does it benefit the designer/developer? What is the proper role of the consumer in RERC research and development efforts?

Assuming stakeholder engagement is important … What does meaningful stakeholder engagement mean (subjects, advisors, consultants, partners)? What strategies are effective for engaging stakeholders? Can we identify shared strategies or resources that may benefit all (or at least numerous) RERC grantees?

Thank You to Our Panelists Mary Anne Sterling Connected Health Resources @ Sterling HIT AD-PCPRN Jim Mueller JL Mueller, Inc. Wireless RERC

Barriers to engagement Lack of knowledge and vision of consumers to understand: the technology their own needs Availability of participants Not knowing how to assess consumer needs without bias IRB complications

Some possible strategies Shared registry of consumers for surveys, focus groups, usability testing, etc. Shared resources to asses understandability of materials for KT. Training for consumers and caregivers to support their involvement in advisory roles. Basic training in research methods and participating in the review process. Protocols for participatory design approaches (e.g., charettes). Change in evaluation criteria for grant review to emphasize patient engagement.