Abstract
Citizen science (CS) approaches involving non-professional researchers (citizens) as research collaborators has been used infrequently in health promotion generally and specifically, in cancer prevention. Standardized CS approaches may be especially useful for developing communication interventions to encourage families to consider cancer genetic services. We engaged survivors of ovarian cancer and their close relatives as CS collaborators to collect and help interpret data to inform content for a website, printed invitation materials, and short-message reminders. We applied an implementation quality framework, and posed four research questions regarding the feasibility of CS: recruitment, data collection, data quality and evaluation of the experience. CS members were recruited through three networks: clinical sites, local and national cancer support organizations, and online ovarian cancer patient support groups. The professional research team operationalized theory-aligned CS tasks, five data collection options, question banks/scripts for creating surveys, structured interviews, online training and ongoing support from research coaches. 14 CS members agreed to the 12-week and 20-hour commitment for an honorarium. CS members opted to do both qualitative and quantitative assessments. CS members collected 261 surveys and 39 structured interviews. The largest number of surveys were collected for Task 1 (n = 102) to assess survivors' reactions to different possible options for motivating survivors to visit a study website; 77% of this data were complete (i.e., no missing values). Data collected for tasks 2, 3, 4, and 5 (e.g., assessment of survivors' and relatives' respective communication preferences) ranged from 10 to 58 surveys (80% to 84% completeness). All data were collected within the specified time frame. CSs reported 17 hours of work on average and regarded the experience positively. Our experience suggests that CS engagement is feasible, can yield comprehensive quantitative and qualitative data, and is achievable in a relatively a short timeline.
Highlights
Patient and public involvement (PPI) is recommended to be an important responsibility of health program planning and implementation globally [1,2,3]
Using the Heigl et al, framework, we implemented a successful effort to recruit a diverse group of Citizen science (CS) members representing ovarian cancer survivors and their close relatives
Fourteen people participated from four regions of the U.S CS members worked with the guidance of a research coach who convened meetings via online conferencing, provided technical support related to data collection and provided updates on progress towards their goals
Summary
Patient and public involvement (PPI) is recommended to be an important responsibility of health program planning and implementation globally [1,2,3]. PPI offers a process of engaging target audiences in a central role as “co-creaters” of intervention content, approaches, and evaluation methods. This approach can maximize the likelihood that health promotion programs will be relevant, successful, and acceptable. The conundrum for research collaborations involving the public is to maximize the extent of engagement while considering pragmatic concerns, such as time constraints of externally funded research To this end, we evaluated the feasibility of engaging citizen scientists, individuals from families affected by ovarian cancer, as part of initial planning for the “Your Family Connects” intervention aimed to encourage uptake of genetic services [U01CA240581-02]
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