ArticleHealth expectations : an international journal of public participation in health care and health policy2020
Engaging young African American women breast cancer survivors: A novel storytelling approach to identify patient-centred research priorities.
Article in Health expectations : an international journal of public participation in health care and health policy, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed.
- Global Insights on the Involvement of Ethnic Minority Populations in Health and Social Care Research Priority Setting: A Systematic Scoping Review.Journal of racial and ethnic health disparities · 2026Article
- Approaches to prioritising primary health research: a scoping review.BMJ global health · 2022Article
- Engaging veteran stakeholders to identify patient-centred research priorities for optimizing implementation of lung cancer screening.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Storytelling training to promote stakeholder engagement in research dissemination.Journal of clinical and translational science · 2022Article
- Understanding patient experiences: The powerful source of written patient stories.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Engaging young African American women breast cancer survivors: A novel storytelling approach to identify patient-centred research priorities.Health expectations : an international journal of public participation in health care and health policy · 2020Article
Corrections and comments
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Authors and funding
10 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient-centredness is considered an essential aspiration of a high-quality health-care system, and patient engagement is a critical precursor to patient-centred care.
objectivesTo engage patients, health-care providers and stakeholders in identifying recommendations to address research and practice gaps that impact young African American breast cancer survivors.
methodsThis paper reported an approach for research priority setting. This approach applies an engagement process (January-September 2018) of using patient and stakeholder groups, patient storytelling workshops and a culminating storytelling conference in Wisconsin to generate relevant research topics and recommendations. Topics were prioritized using an iterative engagement process. Research priorities and recommendation were ranked over the conference by counting participants' anonymous votes.
resultsOne hundred attendees (43 patients/family members, 20 providers/researchers and 37 community members) participated in the conference. Five topics were identified as priorities. The results showed that three priority areas received the most votes, specifically community outreach and education, providing affordable health care and engaging in complementary care practice. Stakeholders also agreed it is critical to 'include youth in the conversation' when planning for cancer support and educational programmes for caregivers, friends and family members.
conclusionStorytelling as a patient engagement approach can build trust in the patient-research partnership, ensure that patients are meaningfully engaged throughout the process and capture the diversity of patient experiences and perspectives.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.