Navigating Research Partnerships that Include Patients with Serious - - PowerPoint PPT Presentation

Navigating Research Partnerships that Include Patients with Serious Acute or Medically Complex Conditions

Shivonne L. Laird, PhD, MPH

Program Officer Eugene Washington PCORI Engagement Awards Program

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Courtney Clyatt, MA, MPH

Program Officer Pipeline to Proposal Program

• Background on the importance of engagement

in patient-centered research

• Some considerations as you prepare for an

engaged research project

• Examples from researchers and patient

research partners

• Summary of lessons learned

Today’s Webinar

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Why Engage?

To establish trust and a sense of legitimacy in research findings To encourage successful uptake and use of research results To influence research to be patient-centered, relevant, and useful

PCORI Funds Research That…

• Patients are partners in research, not just “subjects”
• Active and meaningful engagement between scientists,

patients, and other stakeholders

• Community, patient, and caregiver involvement already

in existence or a well-thought-out plan

“Patient and stakeholder engagement” What we mean by…

• The project aims to answer questions or examine outcomes that

matter to patients within the context of patient preferences

• Research questions and outcomes should reflect what is

important to patients and caregivers

“Patient-centeredness”

PCORI Funds Patient-Centered Outcomes Research

PCOR is a relatively new form of CER that….

• Considers patients’ needs

and preferences, and the

• utcomes most important

to them

• Investigates what works, for

whom, under what circumstances

• Helps patients and other

healthcare stakeholders make better-informed decisions

Engagement as a Path to Useful, High-Quality Research

Evaluation Proposal Review; Design and Conduct of Research Dissemination and Implementation of Results Topic Selection and Research Prioritization

Who Are Our Stakeholders?

Purchasers Caregivers/Family Members Payers Patients/Consumers Clinicians Training Institutions Policy Makers Hospitals/Health Systems Industry Patient/Caregiver Advocacy Organizations

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Our Engagement Rubric

Provides practical guidance to applicants, merit reviewers, awardees, and engagement/program officers on effective engagement in research

• Planning the Study: How patient and stakeholder partners will

participate in study planning and design

• Conducting the Study: How patient and stakeholder partners will

participate in the conduct of the study

• Disseminating the Study Results: How patient and stakeholder

partners will be involved in plans to disseminate study findings and ensure that findings are communicated in understandable, usable ways

• PCOR Engagement Principles: Reciprocal relationships, co-learning,

partnership, trust, transparency, honesty

Provide personal perspectives (e.g., priorities, experiences)

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Give guidance to improve research project processes and materials (e.g., outcomes studied, recruitment strategies) Active participation in conduct and dissemination (e.g., recruiting participants, collecting data, presenting results)

Note: Data from annual awardee report and Patient and Stakeholder WE-ENACT. 258 responses from awardees, 254 responses from partners

PCORI research partners change the research

• Mission: The P2P program aims to build a national community of patient,

stakeholder, and researcher partnerships that have the expertise and passion to participate in patient-centered outcomes research within their communities that leads to high-quality research. In addition, the P2P program is a funding mechanism to develop and strengthen the engagement in proposals submitted for funding.

• Purpose: Build capacity and cultivate the development of proposals with

sound scientific rigor and robust patient engagement.

Pipeline to Proposal Awards (P2P)

Courtney Clyatt Melanie Thompson

Program Officer Senior Program Associate cclyatt@pcori.org mthompson@pcori.org

P2P Program Team

Colorado Foundation for Public Health and the Environment Michigan Public Health Institute Health Resources in Action Georgia Health Policy Center National Network of Public Health Institutes Projects that cover more than one region are housed under the National Program Office

PCORI Program Team Pipeline Award Program Offices

Plan Study Conduct Study Disseminate Study Results

PCORI Research Process

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1) P2P helps foster capacity building for PCOR in the community before a study plan is even developed. This enables underserved/minority and otherwise “missing” communities to actively engage in the research process. 2) It has been shown that when patient partners are engaged early on and throughout the research process, they are more likely to help in the implementation and dissemination of study results in their communities. Pre- planning

P2P Awards Strengthen the PCORI Research Enterprise

Implement Study Results

Mitigating Challenges

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• Describe how your partnership will work as a team throughout the research process,

from planning to dissemination;

• Identify roles of partners and expectations at each level (i.e. subcommittees,

workgroups, etc.);

• Include contributions from all project stakeholders;
• Describe how often participants will meet, how they will contribute to the

partnership, how lack of participation will be addressed, etc.;

• Describe how all partners engage and have equal contribution in decision-making

and strategic planning;

• Describe how decision will be made, who is responsible for making various decisions

and;

• Describe what protocols will be used to ensure transparency and inclusivity.

Examples of decision-making styles and structures include consensus, voting, weighting decisions, etc.

Governance Document

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• After your project team has identified the roles of the key stakeholders

involved in the project, your project team can determine things like:

• Will there be a project co-lead with a clearly defined role?
• Who will be responsible for communicating with the funder?
• Who will be responsible for gathering information for reports to the

funder?

• Who will be responsible for submitting reports to the funder?

Sharing responsibilities

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• Message Boards
• Twitter Chat
• Facebook
• Town halls

Creative ways for meeting or communicating with your project team

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Examples from Practice:

We’ll Take the Village: Engaging the Community to Better Health Establishing a Patient-Centered Research Community for Cystic Fibrosis

Project Lead: Ronnie Sharpe Project Lead: Mary Bentley LaMar

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We’ll Take The Village: Engaging The Community To Better Health

Engagement Processes From A Community Based Perspective

PCORI Webinar OCTOBER 17, 2017

Mary Bentley LaMar, Founder & Executive Director Beverly Lucas, Patient Partner

The Sickle Cell Association of New Jersey

To keep the team engaged we . . .

• Allow the village to see the fruits of their labor by providing regular updates on

the project’s progress

• Keep the team Informed of the next steps
• Continuously reinforce the idea that PCORI really wants to hear what we have to

say

• Acknowledge Individual efforts of team members publicly in our newsletter, via

social media and at scientific conferences

• Allow/encourage everyone to speak and all thoughts are respected and recorded
• Educate on CER to help everyone understand the project

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Some of the meetings and town halls were held at events that were fun and educational.

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Challenges

• Illness
• Trust
• Research is unfamiliar territory
• Child care/ Family obligations
• Transportation
• Handicap Friendly

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To Meet The Biggest Challenge We. . .

Listened to our patient population. They identified the use of technology as the key to staying involved and engaged. Established a Village Advisory Committee. Created “The Village,” a space for a larger community of stakeholders to get involved. Established written Operations Guidelines to formalize the governance of the project.

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You Can Get There From Here

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Thank You!

The Sickle Cell Association of New Jersey www.sicklecellnewjersey.org

P.O. Box 9501 Newark, New Jersey 07104

info@sicklecellnewjersey.org 973 482-9070

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Eugene Washington PCORI Engagement Awards Team

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Lia Hotchkiss, MPH Director Shivonne L. Laird, PhD, MPH Program Officer Yasmeen Long, MA Program Officer Rachel Mosbacher, MPA Program Officer Alicia Thomas, PhD, MHS Program Officer Ivey Wohlfeld Senior Program Associate Ashley Freeman Program Associate

Engagement Award Overview (June 1, 2017)

Engagement Award (EA) projects ▪ Equip patients and other stakeholders to engage as meaningful partners in PCOR/CER from topic selection to dissemination or implementation of results ▪ Support organizations to lay groundwork for disseminating and implementing research results or products derived from PCORI Funding through an Engagement Award Initiative Notice (EAIN) supports meetings/conferences that align with PCORI’s mission and strategic plan, and facilitate expansion of PCOR/CER in areas such as: ▪ research design and methodology ▪ research development ▪ dissemination and implementation

Awards of up to $250,000 per project, up to two years in duration Awards of up to $250,000 per project, up to two years in duration

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Awards of up to $50,000 per conference, up to one year in duration Awards of up to $50,000 per conference, up to one year in duration

• People living with complex conditions, or their caregivers,

may have limited time to dedicate to your project

• Availability may not be regular or may follow a cycle not

aligned with the project timeline

• Partners should agree on flexibility ahead of time
• There should be a cushion built into the project timeline to

accommodate life events

• Tight deadlines may not be practical
• Do not allow the progress of the project timeline to be

dependent on any one individual

Engagement Awards Lessons Learned: Considerations in Partnership

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• Be conscious of the availability of health support services when planning

events (meetings, conferences, etc.)

• Be conscious of special dietary or physical needs that may need to be met

while planning

• Manage expectations in advance
• Patient partners need to be realistic about their needs and availability and

voice them in advance

• Research partners need to be realistic about their competing

administrative pressures and remind administrative stakeholders of the possible need for flexibility

EVERYONE should be ADAPTABLE

Considerations in Partnership (cont’d)

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“Tennessee Sickle Cell Disease Network”

Engagement Award Contract #1107-VU

Examples from Practice:

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Velma McBride Murry, Ph.D. (Project Lead) Tilicia L. Mayo-Gamble, Ph.D. Alexis Gorden, M.B.A.

Lessons Learned: Partnering with Patients as Research Team Members

Velma McBride Murry, Ph.D. Tilicia L. Mayo-Gamble, Ph.D. Alexis Gorden, M.B.A

Associated Project: Tennessee Sickle Cell Disease Network

Potential Challenges

• f Patients with Sickle Cell Disease

Serving as Community Health Ambassadors

• Time constraints for completing study activities
• Scheduling availability for training sessions
• Personal obligations
• Personal Illness
• Familial Illness

Challenges of Patients as Research Partners

• Establishing trust with the CHAs and researchers
• Apprehension to participate due to historical events in

research among African Americans

• Apprehension due to sigma associated with SCD in the

African American Community

• Time constraints for families seeking to engage in

research activities

Overcoming the Loss of an Integral Patient Partner

• Dr. Trevor Thompson entered this project

with a patient and advocate perspective.

• He was also the Founder and Director of

the partnering community organization.

• After his passing, Community Health

Ambassadors made the difficult decision to either move forward or discontinue their work on the project.

Urban Community Health Ambassadors Conducting Research 101

Rural Community Health Ambassadors Conducting Research 101

Rewards of Participation among Community Health Ambassadors

• Dr. Lametra Scott, Local CHA

…During the course of this project, I enjoyed meeting people from all walks of life and ethnic groups and educating them on the importance of understanding their disease and why practicing preventive care and behaviors is fundamental to enabling them to have control over their disease.

Janice Reed, Local CHA

…The objective was to educate and train those individuals affected with SCD about treatments and sources to obtain information concerning the disease. The patients were very receptive and had lots of input on gathering information.

Community Health Ambassadors

Vanessa Steele, Local CHA

…the participants were eager to “share” similar experiences and presumed their collective voices would make a difference.

Alexis Gorden, Regional CHA

…This access allowed me to learn firsthand about my form of Sickle Cell disease and empowered me with the information to communicate effectively when in need of care.

Community Health Ambassadors

Justin Flowers, Local CHA

…I really hope the work we accomplished within this project will help those consumers we reached, providers as well, see the importance of having a medical home. I hope the providers understand the importance of hearing out their patients concerns when it comes to treating their Sickle Cell.

Quotes from Community Health Ambassadors

• There are so many people in my community that have sickle cell and I

just had no clue.- Janice Reed, Local CHA

• We were able to identify barriers in rural communities in regard to

communication with the healthcare providers. Some patients refuse to leave their metro providers due to fear of inadequate care in their own

• communities. – Vanessa Steele, Local CHA
• As a pharmacist and mom to a child with sickle cell disease I have used

my profession as a way to advocate and increase awareness on the challenges of managing sickle cell disease. My co-workers and fellow pharmacists have been very receptive and are now looking ways they can play a role. – Dr. Lametra Scott, Urban CHA

Recommendations for Engaging Patients in Patient Centered Research

• Input from the sickle cell community is critical.
• One size doesn’t fit all
• Foster positive community-researcher

relationships

• Get SCD patients on the band wagon early on
• Find ways to keep the momentum going

What works for you may work for others

• Researchers are continually seeking effective

strategies for engaging minority and underrepresented communities in health research.

• Successful strategies to engage minorities with SCD

may serve as a template for engaging other hard to reach or underrepresented populations.

Summary of Lessons Learned

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Questions?

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Pipeline to Proposal Program p2p@pcori.org Eugene Washington PCORI Engagement Awards Program ea@pcori.org

For more information

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www.pcori.org