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

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

3. 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.”

4. 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.

5. Engagement in RERC R&D efforts?

6. 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?

7. 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?

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

9. 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

10. 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.