Linda Cabral, Laura Sefton, and Kathy Muhr on Recruiting People with Mental Health Conditions for Data Collection

Hello! We are Linda Cabral, Laura Sefton and Kathy Muhr from the Center for Health Policy and Research at the University of Massachusetts Medical School. We recently completed an evaluation project that involved recruiting people with mental health conditions to participate in individual interviews, focus groups, and surveys regarding their experiences with a mental health peer specialist training program. In 2010, Woodall and colleagues reported that many barriers exist to participating in mental health research, including:

  • fear
  • suspicion and/or distrust of researchers
  • concerns about confidentiality
  • transportation difficulties
  • severity of illness
  • inconvenience
  • fear of relapse as a result of participation
  • the stigma of mental illness

We wanted to share some tips and lessons learned to address some of these barriers.

Hot Tip: Get approval. Before starting data collection, consider applying for Institutional Review Board (IRB) approval. While many evaluations for program improvement purposes do not require IRB approval, if you wish to disseminate your findings to a broad audience, this approval may be necessary to insure that recruitment efforts take into consideration an IRB’s requirements for working with vulnerable populations.

Hot Tip: Establish trust. To establish trust, the evaluation team members visited the training program and were introduced as people who would be in contact after the training was completed to get their feedback on the training. This informal introduction by a trusted source paved the way for outreach later on.

Lesson Learned: Use a script. Having a telephone script was a good tool for initiating a conversation or leaving a message with the intended participant. It helped us to remember to cover key points with potential participants.  It also reinforced our concern for their confidentiality as we avoided sharing information with others when leaving a message.

Lesson Learned: Be transparent. Once we contacted the participant, we were transparent about the purpose of the evaluation, who was funding it, and how their information would be used.

Lesson Learned: Provide multiple access points. To increase survey response rates, we brought copies to all in-person interviews, allowing time after the interview for participants to complete the survey. If they required assistance, we were present, and able to do so in real-time.

Lesson Learned: Be flexible. To increase our recruitment rate, we were flexible in our interview and survey administration formats. When possible, our first preference was to conduct in-person interviews at a time and place of the person’s choice. When this was just not feasible or could have led to a decision to not participate, we offered to conduct the interviews and survey data collections over the phone.

Do you have questions, concerns, kudos, or content to extend this aea365 contribution? Please add them in the comments section for this post on the aea365 webpage so that we may enrich our community of practice. Would you like to submit an aea365 Tip? Please send a note of interest to . aea365 is sponsored by the American Evaluation Association and provides a Tip-a-Day by and for evaluators.

2 thoughts on “Linda Cabral, Laura Sefton, and Kathy Muhr on Recruiting People with Mental Health Conditions for Data Collection”

  1. Diane Prentiss

    Thank you for your post yesterday! It’s great to hear others’ experience getting primary input from people with mental health problems.
    This is very much what we do here in San Francsico in our evaluations of the California Mental Health Services Act (MHSA). In alignment with the principles of mental health recovery (see SAMHSA:, we have frequently engaged MH consumers, or “community advocates”, in the development of tools and strategies for data collection. Whenever appropriate, they also help with data collection and contribute to the analysis and interpretation of findings. We find this level of engagement benefits all of us on many levels. Thanks Again!

  2. Morgan Braganzaa

    Thank-you SO much for this post! I am in the middle of developing an evaluation design where I will be seeking data from a similar population! I would be really interested in hearing more detail about this evaluation!

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