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Ensuring Input fromHard-to-Reach Consumers

C. Daniel Mullins, PhDProfessor

University of Maryland School of Pharmacy

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Disclaimer: The views expressed in this presentation are solely those of the speaker and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee. Acknowledgment: Parts of this presentation are based on work completed under contract PCORI-SOL-PCWG-002, funded by the Patient-Centered Outcomes Research.

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Points to Take Away

• Consumer engagement should involve diverse patients including hard-to-reach patients

• Consumer engagement requires trust & respect

• Pre-engagement is a critical component

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Who is Hard-to-Reach?

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Who is Hard-to-Reach?• Those underrepresented in research• Those with limited access to health care

• Minorities• People from low SES backgrounds• Elderly patients• Non-English speaking• Physical limitations• Hearing• Mobility• Sight

• Cognitively Impaired

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How Can We Engage Hard-to-Reach Consumers?

“If you build it, they will come…” doesn’t always work

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How Can We Engage Hard-to-Reach Consumers?

The journey begins by meeting hard-to-reach consumers where they are

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How Can We Engage Hard-to-Reach Consumers?

There are others along the journey who can help:• Community Members• Leaders• Organizational Partners

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• Pre-engaging: Understand the community

• Relating: Be genuinely willing to partner

• Communicating: Keep questions simple; Avoid making judgments

• Being there: Keep “coming back” and interacting with participants

Building and Maintaining Trust

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Runs the gamut of individuals to organized groups:• Individuals (“Mayor of the block”)• Groups (Health care professionals, employers)• Associations (Communities and professions) • Networks (Social organizations and federations)

Partnering with People

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Prior to implementing a study, investigators should utilize a period of “pre-engagement” when recruiting research participants and partners.

Allows time to:• Assure comprehension • Have questions answered and concerns addressed• Discuss participation with family and friends

“Pre-engagement” may also apply to other phases of research

Pre-Engagement

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10-Step Process for Conducting CER *

1. Topic Solicitation2. Prioritization3. Framing the Question

Public Announce-

ments

Patient Forums

Delphi Process

* Based on Mullins CD, Adbulhalim AM, Lavallee DC. Continuous Patient Engagement in Comparative Effectiveness Research. JAMA 2012; 307(15): 1587-8.

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10-Step Process for Conducting CER *

4. Selection of Comparators and Outcomes

5. Creation of Conceptual Framework

6. Analysis Plan7. Data Collection

In-person Meetings

Focus Group Inter-views

Telecon-ferences

Electronic Social Media

Tele-phone Calls

* Based on Mullins CD, Adbulhalim AM, Lavallee DC. Continuous Patient Engagement in Comparative Effectiveness Research. JAMA 2012; 307(15): 1587-8.

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10-Step Process for Conducting CER *

8. Reviewing & Interpreting Results

9. Translation10.Dissemination

Teach-Back Method

Critique Documents (e.g. Patient

Guides)

Media

* Based on Mullins CD, Adbulhalim AM, Lavallee DC. Continuous Patient Engagement in Comparative Effectiveness Research. JAMA 2012; 307(15): 1587-8.

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Who is Hard-to-Reach?

Who cannot reach whom?

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• PCOR is CER with active involvement of patients and their care providers at every step

• PCOR also involves various other stakeholders– Health care providers and delivery systems– Patient advocates– Policy makers

• PCOR partnerships require trust and respect

Summary