Applying citizen science to engage families affected by ovarian cancer in developing genetic service outreach strategies.
Applying citizen science to engage families affected by ovarian cancer in developing genetic service outreach strategies.
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DOI：
10.1371/journal.pone.0262575
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发表时间：
2022
期刊：
影响因子：
3.7
通讯作者：
Guan Y
中科院分区：
文献类型：
--
作者：
McBride CM;Campbell GP;Zhao J;Pentz RD;Escoffery C;Komonos M;Cannova K;Byrne JLB;Paris NM;Shepperd JR;Guan Y
公民科学（CS）的方法，涉及非专业研究人员（公民）作为研究合作者已很少用于健康促进一般，特别是在癌症预防。标准化的CS方法可能对制定沟通干预措施特别有用，以鼓励家庭考虑癌症遗传服务。我们聘请卵巢癌幸存者及其近亲作为CS合作者，收集和帮助解释数据，为网站提供信息内容，印刷邀请材料和短信提醒。我们应用了一个实施质量框架，并提出了四个研究问题，CS的可行性：招聘，数据收集，数据质量和评估的经验。CS成员通过三个网络招募：临床站点，地方和国家癌症支持组织，以及在线卵巢癌患者支持团体。专业的研究团队操作理论对齐CS任务，五个数据收集选项，问题库/脚本创建调查，结构化访谈，在线培训和研究教练的持续支持。14名政务司司长同意支付12星期及20小时的酬金。CS成员选择进行定性和定量评估。CS成员收集了261份调查和39次结构化访谈。任务1（n = 102）收集了最多的调查，以评估幸存者对激励幸存者访问研究网站的不同可能选项的反应; 77%的数据是完整的（即，无缺失值）。为任务2、3、4和5收集的数据（例如，评估幸存者和亲属各自的沟通偏好）的调查次数为10至58次（完成率为80%至84%）。所有数据均在指定时间范围内收集。CS报告平均工作17小时，并积极看待这一经验。我们的经验表明，CS参与是可行的，可以产生全面的定量和定性数据，并在相对较短的时间轴内实现。
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.
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影响因子：
28.4
作者：
Norquist BM;Harrell MI;Brady MF;Walsh T;Lee MK;Gulsuner S;Bernards SS;Casadei S;Yi Q;Burger RA;Chan JK;Davidson SA;Mannel RS;DiSilvestro PA;Lankes HA;Ramirez NC;King MC;Swisher EM;Birrer MJ
通讯作者：
Birrer MJ
DOI：
10.1207/s15327957pspr0304_2
发表时间：
1999-01-01
期刊：
Personality and social psychology review : an official journal of the Society for Personality and Social Psychology, Inc
影响因子：
--
作者：
Burger, J M
通讯作者：
Burger, J M
DOI：
10.1098/rstb.2019.0461
发表时间：
2020-12-21
期刊：
Philosophical transactions of the Royal Society of London. Series B, Biological sciences
影响因子：
--
作者：
Kelly R;Fleming A;Pecl GT;von Gönner J;Bonn A
通讯作者：
Bonn A
影响因子：
1.9
作者：
Greenberg, Samantha;Yashar, Beverly M.;Marvin, Monica
通讯作者：
Marvin, Monica
影响因子：
4.5
作者：
Brunton G;Thomas J;O'Mara-Eves A;Jamal F;Oliver S;Kavanagh J
通讯作者：
Kavanagh J