1. Ensuring Input from
Hard-to-Reach Consumers
C. Daniel Mullins, PhD
Professor
University of Maryland School of Pharmacy
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2. 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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3. 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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4. Who is Hard-to-Reach?
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5. 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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6. How Can We Engage Hard-to-Reach Consumers?
“If you build it, they will come…”
doesn’t always work
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7. How Can We Engage Hard-to-Reach Consumers?
The journey begins by
meeting hard-to-reach
consumers where they are
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8. 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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9. Building and Maintaining Trust
• 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
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10. Partnering with People
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)
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11. Pre-Engagement
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
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12. 10-Step Process for Conducting CER *
Public
Announce-
1. Topic Solicitation ments
2. Prioritization
3. Framing the Question
Delphi Patient
Process Forums
* 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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13. 10-Step Process for Conducting CER *
4. Selection of In-person
Meetings
Comparators and
Outcomes Tele-
Focus
Group
phone
5. Creation of Calls
Inter-
views
Conceptual
Framework
6. Analysis Plan Electronic
Social
Telecon-
ferences
Media
7. Data Collection
* Based on Mullins CD, Adbulhalim AM, Lavallee DC. Continuous Patient Engagement
in Comparative Effectiveness Research. JAMA 2012; 307(15): 1587-8. 13

14. 10-Step Process for Conducting CER *
Teach-Back
8. Reviewing & Method
Interpreting Results
9. Translation
10.Dissemination Critique
Documents
Media
(e.g. Patient
Guides)
* Based on Mullins CD, Adbulhalim AM, Lavallee DC. Continuous Patient Engagement
in Comparative Effectiveness Research. JAMA 2012; 307(15): 1587-8. 14

15. Who is Hard-to-Reach?
Who cannot reach whom?
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16. Summary
• 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
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