Improving Health Research on Small Populations Proceedings of a Workshop (2018) / Chapter Skim
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6 Recruitment, Retention, and Collection of Data
6 Recruitment, Retention, and Collection of Data
Pages 71-86
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From page 71... ...
. ISSUES AND CHALLENGES ASSOCIATED WITH RECRUITMENT AND RETENTION FOR HEALTH RESEARCH Vetta Sanders Thompson said most recruitment issues are variations on themes.
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On her projects, people who recruit receive a lot of training. They are provided with up-to-date social service resource information that they can provide to potential participants.
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They use formative research to talk to people about incentives, show them the options, and solicit their opinions. Education and research literacy are important, she said, and researchers need strategies to help people understand their work.
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From page 74... ...
They have implemented a community-based participatory research training program for community members to promote the role of underserved populations in research, called the Community Research Fellows Training Program. The intention is to train community members to become good consumers of research, understand how to use research as a tool in improving health outcomes, and increase community members' understanding of how to work with academic researchers.
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From page 75... ...
It identifies the assets in and concerns of communities and incorporates them in the design and conduct of the research. Formative research at the beginning helps to identify community assets in local institutions and resources, community associations, and individual people, especially local leaders.
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He described community-based research networks in public health, dentistry, and rehabilitation. His first suggestion about how to be strategic in approaching communities for research opportunities was to encourage the accreditation of local health departments through the Public Health Accreditation Board, a nonprofit, nongovernmental organization.
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KCP works closely with 15 District Cancer Councils to analyze local cancer data, identify and prioritize the community's cancer needs, and develop interventions/ solutions. KCP is jointly administered by the UK Lucile Parker Markey Cancer Center and the University of ouisville James Graham Brown Cancer L Center.
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From page 78... ...
For example, there are several ways to use social media, many illustrated by Sanders Thompson, such as a media site, Facebook advertising, or a Twitter account. From the respondent-driven sampling point of view, she said, once seeds have been recruited, they may recruit others by tweeting or putting something on their Facebook pages.
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From page 79... ...
Videos may also be a way to address literacy issues. Mooney said the University of Utah Huntsman Cancer Institute participates in ORIEN, a research collaboration among a number of cancer centers in a program called Total Cancer Care.
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Mooney talked about the burgeoning area of wearables, home sensors, community sensor data, and GPS data. This new area is advancing what can be done in collecting data and in machine learning to understand it.
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From page 81... ...
For example, if the person has a wearable device, the researcher can sense heart rate variability and use that information to decide when an intervention might decrease the person's stress and vulnerability versus when a positive intervention might be well received. Concluding Example Mooney described Symptom Care at Home, a remote symptom monitoring and automated self-management coaching platform with an alert component that alerts providers of patients' symptoms that are poorly controlled.
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Improving health research for these groups involves two tasks: (1) to identify commonalities that can help move research forward with common approaches and (2)
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Onega highlighted innovative strategies from the three presenters. She pointed to Sanders Thompson's description of the Community Research F ellows Training Program and her advice that having research teams " irror m the community" is critical to success.
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This suggests, she said, an iterative and probably cyclical but sequential process of identifying a need, knowing the target population, and being able to use that knowledge to adapt the research approach to be most effective and appropriate. OPEN DISCUSSION Ellen Cromley asked Mooney about challenges related to the adequacy of Internet technology, as well as protecting privacy and confidentiality in the digital environment.
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He noted that if research efforts do not have that kind of leadership, it is more difficult to engage the community. Sanders T hompson said the Community Research Fellows Training Program could not have succeeded without leadership support.
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Third, in her view, the failure to identify and respond to health disparities among small populations perpetuates health disparities. Fourth, researchers should always be mindful of Paul Brodeur's very poignant saying, "The statistics are human beings with the tears wiped away." Diane Korngiebel appreciated the use of commercially produced health technology interventions, but raised ethical challenges.
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