EVENTS

A Panel on:

Recruiting participants for clinical research at UCI, Part 2: Recruiting through the community

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Sample questions we will address

This is my first time recruiting from the community, where do I start?
If I partner with a local community-based organization, how can I invite their clients to participate in research?
How can I align my research goals with my community partner’s goal?

 

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Featuring:

Joshua Grill, PhD
Director, Accrual and Retention Consult Service, Institute for Clinical and Translational Science
Professor, Psychiatry and Human Behavior, School of Medicine
Professor, Neurobiology and Behavior, School of Biological Sciences

Adrijana Gombosev, MS
Accrual and Retention Consult Service Manager, Institute for Clinical and Translational Science

Dara Sorkin, PhD
Director, Community Engagement, Institute for Clinical and Translational Science
Professor, Department of Medicine

Robynn Zender, MS
Community Engagement Manager, Institute for Clinical and Translational Science

Pamela Pimentel, RN
Community Research Liaison UCI School of Nursing and Institute for Clinical and Translational Science

Monique Daviss
Executive Director, El Sol Science and Arts Academy

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Chair:

Amir M. Rahmani, PhD
Associate Director, UCI Institute for Future Health

Michael Hoyt, PhD
Associate Professor, Public Health

Margaret Schneider, PhD
Evaluation Director, Institute for Clinical and Translational Science

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Resources

1)   Background Articles

• • These two articles are recommended by Pamela Pimentel to provide background information of non-profit organization structures and building collaborations
    • Ten Nonprofit Funding Models by William Landes Faster, Peter Kim, & Barbara Christiansen from Stanford Social Innovation Review
      • “With an understanding of these 10 funding models, nonprofit leaders can use the for-profit world’s valuable practice of engaging in succinct and clear conversations about long-term financial strategy.”
    • Collective Impact by John Kania & Mark Kramer from Stanford Social Innovation Review
      • “Large-scale social change requires broad cross-sector coordination, yet the social sector remains focused on the isolated intervention of individual organizations.”
  • The Association of American Medical Colleges (AAMC) has many resources available online related to building trustworthiness and community engagement. Here are some resources from AAMC- The Principles of Trustworthiness:
    • The Principles of Trustworthiness
    • 10 Principles of Trustworthiness
    • Principles of Trustworthiness Community Video
    • Principles of Trustworthiness Orientation
  • The Principles of Community Engagement, Second Edition is a publication from the Clinical and Translational Science Awards Consortium Community Engagement Key Function Committee Task Force on the Principles of Community Engagement on the basics and best practices for community The document can be accessed through this link.
  • This article provides a framework for ethical payment to research participants.
    • Gelinas, L., Largent, E. A., Cohen, G., Kornetsky, S, Bierer, B. E., & Lynch, H. F. (2018). A framework for ethical payment to research participants. New England Journal of Medicine, 378, 766-771. https://doi.org/10.1056/NEJMsb1710591

 

2)   Orange County Resources

Here is a list of organizations that have been vetted that may help you identify community-based organizations (CBOs) to partner with within Orange County.

• Festival of Children Foundation– these organization have a wide range of services that all serve children 0-18 years in some way. Some of these organizations also serve the children’s families.
• Orange County Community Foundation– these CBOs have a wide range of missions. To be a part of the Community Foundation the CBO must submit an application which are then thoroughly vetted.
• Orange County Healthier Together– all CBOs listed are reputable and have a health focus.
• One OC– provides a list of Orange County CBOs. If you have trouble navigating the website we suggest calling them to let them know what you are looking for.
• Orange County United Way– Orange County Unite Way’s three key initiatives are ending homelessness, financial security, and study They can be reached at (949)-660-7600.

 

3)   ICTS Community Engagement Research Support Service

The ICTS offers support for community-engaged research including protocol review and study consult, matching services between investigators and community partners, and access to Community Engagement Studios. The Community-Engaged Research (CEnR) Support Service is chaired by Dr. Dara Sorkin (dsorkin@uci.edu), a community and clinical researcher with diverse experiences related to CEnR and community engagement. Robynn Zender (rzender@uci.edu) coordinates the activity of the service. Interested parties may email either person. Visit the ICTS website for more information.
 

4)   ICTS Community Engagement Studio (CES)

The Community Engagement Studio (CES) provides a framework for stakeholders to give immediate feedback to researchers on specific areas of concern before a research project is implemented, or to assist a struggling project. In a CES, members of the researcher’s population of interest (i.e., patients, caregivers, providers, community organizations, etc.) serve in a consultative role, and thus are considered community experts. CES are offered as part of the Community Engagement Research Support Service. For more information about CES, please contact Robynn Zender (rzender@uci.edu) or Adrijana Gombosev (agmobose@uci.edu). Additional information can be found on the ICTS website.
 

5)   Special Population Navigators

The Special Population Navigators Program is available to provide guidance and best practices for recruitment and retention of special populations in clinical research. This group is comprised of a committee of faculty researchers with experiences working with vulnerable populations. The Special Populations Navigators are led by Dr. Uma Rao (umar@uci.edu), behavioral researcher nationally recognized for her work in health disparities. Robynn Zender (rzender@uci.edu) coordinates the activity of the service. Additional information can be found here.
 

6)   ICTS Accruals and Retention Consult Service (ARCS)

The ICTS Accruals and Retention Consult Service (ARCS) aims to support investigators in a manner that ensures the optimal recruitment and retention for their studies. Services provided by the ARCS include protocol review, matching services, access to Community Engagement Studios, and study consult. Additional information can be found on the ARCS website, or you can contact Adrijana Gombosev (agombose@hs.uci.edu) for more information.
 

7)   Consent to Contact Registry (C2C)

The Consent-to-Contact (C2C) registry is a recruitment source provided by UCI Institute for Memory Impairment and Neurological Disorders (UCI MIND) and the ICTS. To request a query from the registry, an IRB-approved protocol that lists the C2C registry as a recruitment source in the Protocol Narrative (PN) is required. Once the IRB documents are received by the registry operations team, a researcher can request a query to be pulled by the registry team. To allow for higher yield when contacting registrants, the list is narrowed down (N=50) based on the study’s inclusion/exclusion criteria. The research team is required to provide contact outcomes for each person that was contacted within 30 days of the registrant list being provided to the investigator. Additional information on the C2C Registry operations and regulations can be found in “UCI C2C Registry Regulations v5” link and information on the C2C Data Elements available from the registry enrollment survey can be found in “C2C Data Elements v.4.0” link. Contact Adrijana Gombosev (agombose@hs.uci.edu) for additional information.
 

8)   ResearchMatch

ResearchMatch is nonprofit program funded by the National Institute of Health (NIH). It is an effective tool to help connect volunteers with researchers who have approved research studies. To learn more about ResearchMatch visit researchmatch.org or contact Robynn Zender (rzender@hs.uci.edu) or Adrijana Gombosev (agombose@hs.uci.edu) who are local representatives for ResearchMatch.
 

9)   ICTS Campus-Community Research Incubator Grant Program

The Campus-Community Research Incubator Program (CCRI) is a small grant fund designed to foster collaborative, research-oriented projects between university researchers and community organizations. Grants are awarded only to teams comprised of campus researchers and community organization representatives. Additional information can be found on the ICTS website, which includes helpful FAQs and previously funded grants. If you have questions about the CCRI mechanism, please contact Robynn Zender (rzender@hs.uci.edu).

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FAQs

How does one find a community partner to partner with?

There are many ways, from reaching out on your own to going with the assistance of the ICTS. If you are clear on the type of partner you need, you can often find Community-Based Organizations (CBOs) that also serve that population and reach out directly. Checking with the ICTS first to see if we have established contacts with an organization may reduce the issues related to “cold calling”. Additionally, if the ICTS does not have established relationships with a particular organization, or service domain (such as an organization serving Huntington’s Disease), we may have access to other researchers or departments that do have established contacts with outside organizations.

We also have our Special Population Navigators (SPN), coordinated by Dr. Uma Rao. Our SPNs can help make contacts with hard-to-reach populations (homeless, substance addicted), rare disease, domestic violence, or services for women specifically. You can find more information on SPN in the resource section.
 

How do you identify the right person to contact within the community partner?

The right person to connect with may depend on the size and differentiation of departments within the organization. In many smaller organizations, the Executive Director or Chief Executive Officer may be the person who oversees outreach, research/evaluation/quality improvement, contracting, and coordination of services. Larger organizations may have staff dedicated to outreach, which can be a great place to start with reaching out. Sometimes you must send a note to the general business email address and hope for a response. You can also pick up the phone and call.
 

What are the differences to consider between small and large community partner organizations?

Smaller organizations may be easier to schedule and accomplish tasks with as you may be dealing with only one person or a tight-knit group who communicate frequently. On the other hand, a smaller organization may have limits as to what they can do in terms of dedicating staff to a partnered project or helping with recruitment, covering expenses up front and having to wait for reimbursement, or handling money to pay participants, for example. Larger organizations may have quite the reverse issues as those smaller organizations.
 

What are recommended best practices for starting a working relationship with a CBO?

If possible, start interacting with the CBO before you have research funding, such as attending events hosted by the CBO, to show you care about the organization and to better understand the organizations mission. Additionally, start thinking early on about the relationship, such as the goals of your project, the goals of the CBO, and how the research can be mutually beneficial. It’s important to have a meeting where you establish mutual goals and clearly define expectations. This can include setting boundaries around activities, discussing data and privacy concerns, acknowledging implicit biases, and understanding the organizations comfort zone. It is important to value the real-life experience of the CBO. The staff of the organization can be a wealth of information.
 

How does a researcher create trust with the community partner?

There are many ways to create trust with the community partner. Here are some recommendations:

1. Approach any partner as an equal. Be humble. Consider their primary mission and what they would gain from working with you as an academic researcher. Have some idea of how a project would be mutually beneficial. If there is no real benefit to the organization, if they are merely providing access to research participants without any input or control over how their clientele will be treated/managed/used, there is no incentive for them to work with you.
2. Listen and be genuinely open to changing the project based on the community partner’s ideas, needs, and wishes. Ideally, bring them into the project as it is being developed so it can truly be a collaborative effort that meets everyone’s needs.
3. Follow through. For example, if you say you’re going to return results to research participants, then return results to research participants. If you’re going to provide funding to the organization, then provide funding to the organization.
4. Be responsive.
5. Address problems as they arise.
6. Be honest yet thoughtful. Put yourself in their position to figure out the best course of action or discussion tactic.
7. Remain engaged even after the project and/or funding has ended.

 

What steps should the investigator take after the recruitment is completed to ensure that the partnership remains healthy?

Share the research results with the partner by showing the outcomes of the research. This could be communicated in a presentation regarding the highlights of the research outcomes and sharing the published articles. Having a debrief meeting where lessons learned are extracted provides an opportunity for all partners to share their experience. This provides the opportunity to take lessons learned and apply them in future instances.