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Engaging Citizen Scientists in Your Research

“I was struck by how interested and receptive the citizen scientists were to explanations of why things are done the way they are in clinical care. They did not come with conclusions already in mind; rather, they had unanswered questions. When I have similar discussions with colleagues it’s very different: we have our biases and predetermined notions of how things ought to be done that are based on how things have historically been done. This lack of rigidity makes them flexible and valuable partners in creating better clinical processes and stronger research agendas.”

– Eric I. Rosenberg, M.D., MSPH, Associate Professor and Chief, Division of General Internal Medicine, Department of Medicine

The Citizen Scientist Program

The mission of the Citizen Scientist Program at the University of Florida Clinical and Translational Science Institute is to engage the public, including patients with lived experience and families of individuals with particular health care issues, as partners with scientists and community clinicians in the research process. In this program, the citizen scientists identify research topics of importance in collaboration with scientists and other stakeholders. Their perspectives are also integrated into the research proposal during the development of the research questions and outcomes of interest. This represents a new paradigm in the development of research, with stakeholder engagement at the point of inception. By partnering patients with scientists, community clinicians, and other stakeholders, as needed for the research topic, the program aims to 1) improve the quality, applicability, and relevance of research; 2) translate the findings into a broad range of health care delivery settings; and 3) ultimately improve health outcomes relevant to patients and their families.

Aligning with the principles of patient-centered research best practices, the Citizen Scientist Program employs active stakeholder engagement to inform UF Health’s continuously learning health care system. Moreover, the program provides lasting infrastructure, training, and support to ensure productive interactions between researchers and other constituents, as well as a platform for the types of extensive engagement essential for incorporating stakeholder feedback in ways that are sustained and responsive.

In its 2013 report, the Institute of Medicine (IOM) identified the inclusion of patients, caregivers, and other stakeholders in the research process as a necessary step in advancing translational science.[1] In addition, the Roundtable identified “The Patient as a Catalyst for Change,” stating learning should be bi-directional, such that the consumer not only becomes better informed through active participation in health care research and outcomes, but the health care system also benefits greatly from stakeholder engagement in the research process by improved quality, efficiency, and value of care.[2] According to the IOM reports, patients invited to become involved in the research process have much to offer the research enterprise, including:

  • Helping to identify local community health needs
  • Describing possible best practices
  • Providing critical input in developing research questions
  • Identifying outcomes of interest
  • Advising on the development of culturally appropriate protocols and recruitment tactics
  • Informing researchers of modifying, moderating, outcome, and possible confounding variables

In addition to the IOM, several funding agencies explicitly support this shift toward inclusion of end-user perspectives in the research process. The Patient-Centered Outcomes Research Institute (PCORI) and the Agency for Healthcare Research and Quality (AHRQ) are especially interested in engaging diverse stakeholders in the research process.

PCORI defines “engagement in research” as “the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the research process – from topic selection through design and conduct of research to dissemination of results.” PCORI also notes that while an engagement plan is required as part of its application process, it does not require specific activities and instead “encourage[s] applicants to bring their most creative engagement ideas forward.”[3] AHRQ’s Guide to Patient and Family Engagement states that “conceptually, both patients and providers support patient and family involvement and participation in their own care and recognize that it can lead to better patient experiences and outcomes.”[4]

Levels of Engagement

“When I sat and thought, why did you do this? The main reason I did is because I am big, big, big on health care … I can say the bottom line is I love challenges, and I see this as a challenge.”  – Shirley Bloodworth, Citizen Scientist

Citizen scientists’ level of engagement in the research process can vary greatly in complexity and the frequency of assigned tasks. The chart below outlines three levels of engagement (minimal, moderate, and sustained) with examples of the types of tasks associated with each level of engagement. The levels are additive; higher levels of engagement include activities from lower levels of engagement. Sustained engagement includes minimal and moderate engagement activities, but over the life of the research study or studies.

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Minimal engagement describes the process of seeking input from patients and stakeholders to inform how research is communicated and requires a relatively brief time commitment from the citizen scientists. Examples may include reviewing all or some sections of letters of intent, grant applications, informed consent forms, and recruitment or information dissemination strategies as well as giving feedback on a documents’ readability, feasibility, relevance, or some other specific attribute that will then be incorporated into the final versions of the document. Seeking input on materials without integrating their feedback is considered information gathering and not engagement. Minimal engagement can significantly impact success of the research study. For example, well-designed materials used in recruitment and informed consent forms that are understandable to the target population can result in achieving participant accrual targets.

Moderate engagement signifies that research design decisions will be based on information provided by and/or collected from the citizen scientists. This involves collaboration, shared decision-making and open-ended discussion in addition to audit and feedback. Examples of moderate engagement may include involving citizen scientists in the design and implementation of a strategy to recruit and retain study participants or the dissemination of study findings to the intended audience.

Sustained engagement describes significant and meaningful collaboration with citizen scientists as an equal partner on the research team, with involvement ranging from the generation of research questions to the design, implementation, and dissemination of study findings, and potentially co-authoring scientific publications. Sustained engagement implies the citizen scientist is involved as a co-investigator on the project and has key decision-making roles.

As you move through the levels of engagement, the time commitment of both the citizen scientists and the research team in facilitating a productive collaboration and in the completion of the required tasks increases commensurately. However, the extensive nature of sustained engagement allows for citizen scientists to inform multiple aspects of the research process and thereby embodies the best practices outlined by funding agencies such as PCORI for ensuring that research is both relevant and impactful.

If you are interested in engaging citizen scientists in an upcoming research project, please contact Janet Brishke, the Citizen Scientist Program project manager, at jbrishke@ufl.edu or 352-294-5979 at your earliest convenience to find out more about the process and identify the level of engagement best suited for your project.


 

[1] “The CTSA Program at NIH: Opportunities for Advancing Clinical and Translational Research” Institute of Medicine Board on Health Sciences Policy

[2] “The Learning Healthcare System” Workshop Summary Institute of Medicine Roundtable on Evidence Based Medicine

[3] http://www.pcori.org/funding-opportunities/what-we-mean-engagement

[4] http://www.ahrq.gov/research/findings/final-reports/ptfamilyscan/ptfamilysum.html