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Wha hat t is is Patient tient-Cent Center ered ed Outco Outcomes mes Resea esearch (PCOR)? h (PCOR)?

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Questions?

How can I be part of a research team?

Welcome to: Wha hat is P t is Patient tient- Cente Centered Outcom ed Outcomes es Resear esearch (PCOR)? h (PCOR)?

Eldrin Lewis, MD, MPH

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Disclaimer

Acknowledgment: This presentation was based on work completed under contract number 8275-UMB funded by the Patient-Centered Outcomes Research Institute (PCORI).

• The views expressed in this presentation are solely

those of the speakers and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors, or Methodology Committee.

Clarence Ancar

Member of the Stakeholder Advisory Board

The Patient Voice

Sharon Bond

Member of the Stakeholder Advisory Board

Thank you to our Advisors!

Patient Advisors Clarence Ancar Sharon Bond Florence Goodwyn Scott Johnson Rhonda Monroe Healthcare Advisors Philip Duncan Daphne Ferdinand Roosevelt Gilliam Eldrin Lewis (Chair) Jeanne Regnante

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What is research? vs. What is Patient tient-cen cente tered d research?

Eldrin Lewis, MD, MPH

• Gathering information to find answers to

questions

• In health care, research is designed to discover

new information or better understand how to care for people.

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What is research?

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What is Patient-centered Research?

• Patient’s health care questions and desired

needs (e.g., health outcomes) inform and drive the research agenda

• Patients are part of the research team

– Patients co-develop the research plan as part of the research team

• Focus on research that is meaningful and health
• utcomes that matter to patients

Funding from: Patient-Centered Outcomes Research Institute (PCORI) Project Title: PCOR Training for ABC Practitioners and their Patients

Training on Patient-Centered Outcomes Research (PCOR)

Goal of Training

• By providing training about patient-

centered outcomes research (PCOR) to people with heart conditions and their doctors, we hope to increase patient engagement in heart health research.

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Why? & How?

Why: Patients with heart conditions will help guide research so that it is most responsive to their concerns, needs and goals. How: Participate in research

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How to participate in Patient-Centered Outcomes Research (PCOR)?

• C. Daniel Mullins, PhD

Levels of Engagement

Adapted from Forsythe, et al. JGIM, 2015 & Perfetto, ISPOR 2015 Annual Meeting Stakeholder- Directed Collaboration Consultation Study participant

• Stakeholder-Directed
• Patient/Patient group led
• Partnership
• Investigator/Co-investigator
• Collaboration
• Advisory committee member
• Consultation
• Consultant
• Interviews
• Focus groups
• Surveys
• Informal
• Unstructured discussions
• Study participant

Active Passive

Patient Engagement

• Patient engagement at every step of research
• Patient engagement is a continuous process
• It requires trust & respect
• Patient engagement happens even before the

research study begins

• Patient engagement should involve diverse

people, their families and caregivers

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Improving the care

• f people with high

blood pressure

Catherine E. Cooke, PharmD

High blood pressure

~ 1 out of every 2 people has high blood pressure Only ~50% achieves the right level of blood pressure 75% of people with high blood pressure take blood pressure medicine

Sources: 2017 ACC/AHA Hypertension Guideline. JACC May 2018, 71 (19) e127-e248; DOI: 10.1016/j.jacc.2017.11.00; https://healthmetrics.heart.org/rends-prevalence-hypertension-awareness-treatment-control-us-adults-nhanes-2001-2016/

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Patient-Centered Research Study

PLANNING the Study

Who is on the research team? What are the needs of the patients, caregivers

• r family members?

What is the research question? Finding people to participate Collecting data Reporting the results What do the results mean? How can health be improved?

CONDUCTING the Study DELIVERING Solutions

Vandigo J, et al. Expert Rev Pharmacoecon Outcomes Res. 2016;16(2):193-8.

• The research team

– People with high blood pressure – Doctors, nurses and pharmacists – Researchers

• Problem: You keep “giving me more pills” 
• Research question

– How should blood pressure medicines be started and changed to decrease the chance of a heart attack or a stroke?

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PLANNING the Study

High blood pressure research study

• Finding people to participate in the research study

– Recruit patients from health fairs, doctors’ offices, and pharmacies

• Collecting data

– Ask patients questions over the phone

• Reporting the results

Changing blood pressure medications – “I would not want to change my pill. I would want to stay on that pill and if they have to, just up the dosage.” – “I would be so upset. I barely want to take the one I take.”

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CONDUCTING the Study

• What do the results mean?

– There are different ways that doctors can change your blood pressure medicines to get your blood pressure under good

• control. This study found that people with high blood pressure

would rather have the dose of their medicine increased instead

• f having to add another medicine.
• How can health be improved?

– Some pills contain more than one medicine, so if a person needs to take two medicines, then their doctors can give them one pill with both medicines in it.

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DELIVERING Solutions

How to develop trust with the research team?

Eldrin Lewis, MD, MPH

1) Trust is the key, overarching element for PCOR 2) Patient vs. person 3) “Outcome” is an unfamiliar term 4) Research is an abstract concept for many people 5) Researchers need to communicate in a way that is understandable for people who haven’t had much experience in research 6) People do not like being asked repeated questions 7) Community-based PCOR requires flexibility, compromise and time 8) Researchers should give something back to the community

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Lessons Learned

Questions

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