Citations

Abstract Background Women remain underrepresented in alcohol use disorder (AUD) research despite sex- and gender-specific health disparities and barriers to treatment. Community-engaged approaches can identify opportunities for patient-centered comparative effectiveness research (CER) that reflect women’s lived experiences. The WomenWise project used community engaged, bi-directional, partnered learning sessions (PLS) to qualitatively explore women’s perspectives on alcohol misuse, treatment barriers, and priorities for future CER. Methods In 2025, we conducted five 90-minute PLSs via Zoom with attendees who were aged ≥ 18 years, self-identified as a woman, reported lived experience of alcohol misuse, were a family member/caregiver of a woman with AUD, and were affiliated with a WomenWise partner organization or a healthcare provider treating AUD. Moderated PLSs focused on bi-directional knowledge exchange and sharing of experiences. Audio transcripts, Zoom chat content, and one asynchronous online discussion thread were analyzed using reflexive thematic analysis. Suggested future CER topics generated during sessions were presented to the WomenWise community advisory board (CAB), which ranked priority topics by vote. Results In total, 51 attendees shared their experiences. The major themes centered on a sense of shame and stigma unique to women, with many attendees mentioning gendered norms, “mom culture,” “quiet drinking,” and caregiver role strain. Barriers to treatment included structural challenges, poor healthcare provider communication, the need for trauma-informed care, and concerns about privacy particularly in rural areas. Six future CER topics emerged, of which the CAB selected three priorities: (1) harm reduction/moderation versus abstinence-only approaches, (2) trauma-focused care versus standard AUD treatment, and (3) care access and engagement strategies. Conclusions These bidirectional, co-learning sessions identified patient-centered, community-informed priorities for future AUD research in women. The findings highlight the importance of addressing stigma, trauma, structural barriers, and provider communication when designing future women-centered treatment studies and care models.

Background Older LGBTQIA+ patients face discrimination in healthcare and therefore are sometimes reluctant to engage and interact with healthcare providers. This report explores whether a large medically-based internet platform can be used to engage these patients and describes preferable methods for doing so. Methods This study used Mayo Clinic Connect, a continuously monitored, internet-based social media platform of 100,000-plus users. Participants completed a brief on-line survey to ensure their study eligibility. No patient-identifying data was asked. Participants then were to call in by phone during specified day time hours for a 45-minute qualitative interview. Alternatively, as a second subsequent option, they were to complete an on-line typed response to 4 questions about their health and healthcare. No temporal overlap occurred between the availability of the phone interview option and the typed-in response option. Results For the phone interviews, 17 of 64 individuals were deemed eligible, but no individual called in to be interviewed. In contrast, for the typed-in response option, 20 of 37 individuals were eligible and provided comments. Conclusion A large medically-based internet platform can be used to engage older LGBTQIA+ patients, but the use of typed-in comments appears more successful, presumably because of greater anonymity and convenience.

AbstractIntroductionThere is some evidence that social media interventions can promote smoking cessation. This randomized controlled pilot study is the first to evaluate the feasibility and potential efficacy of a Facebook smoking cessation intervention among Alaska Native (AN) adults.Aims and MethodsRecruitment and data collection occurred from December 2019 to March 2021. Participants were recruited statewide in Alaska using Facebook advertisements with a targeted sample of 60 enrolled. Participants were stratified by gender, age, and rural or urban residence and randomly assigned to receive referral resources on evidence-based cessation treatments (EBCTs) (control, n = 30) or these resources plus a 3-month, closed (private), culturally tailored, Facebook group (intervention, n = 31) that connected participants to EBCT resources and was moderated by two Alaska Native Trained Tobacco Specialists. Assessments were conducted online post-randomization at 1, 3, and 6 months. Outcomes were feasibility (recruitment, retention, and intervention engagement), self-reported use of EBCTs, and biochemically confirmed seven-day point-prevalence smoking abstinence.ResultsOf intervention participants, 90% engaged (eg posted, commented) more than once. Study retention was 57% at 6 months (no group differences). The proportion utilizing EBCTs was about double for intervention compared with the control group participants at 3 and 6 months. Smoking abstinence was higher for intervention than control participants at 3 months (6.5% vs. 0%, p = .16) but comparable at 6 months (6.4% vs. 6.7%, p = .97).ConclusionsWhile additional research is needed to promote long-term cessation, this pilot trial supports recruitment feasibility during the Coronavirus Disease 2019 (COVID-19) pandemic, consumer uptake, and a signal for intervention efficacy on the uptake of cessation treatment and short-term smoking abstinence.ImplicationsThis study is the first evaluation of a social media intervention for smoking cessation among Indigenous people. We learned that statewide Facebook recruitment of AN adults who smoke was feasible and there was a signal for the efficacy of a Facebook intervention on the uptake of EBCT and short-term (3 months) biochemically verified smoking abstinence. Clinically, social media platforms may complement current care models by connecting AN individuals and others living in hard-to-reach communities to cessation treatment resources.

Introduction Considerable observational evidence suggests that cancer online support groups reduce feelings of isolation, depression and anxiety, enhance coping and self-management, and lead to better informed patients. Other studies indicate that cancer online support groups can increase distress. Yet no studies theorise the complex, context-dependent mechanisms by which cancer online support groups generate their—sometimes contrasting—outcomes. Methods and analysis Guided by an integrated knowledge translation approach and the strategy for patient-oriented research, we will conduct a realist review of cancer online support groups in partnership with stakeholders. We will follow Pawson’s five steps and existing quality standards to develop a program theory that explains how cancer online support groups work, for whom and in what circumstances. The specific research questions will be: what positive and negative outcomes have been reported on cancer online support groups? What are the mechanisms that are associated with these outcomes, in which contexts and for whom? Through a rigorous review of relevant scientific and grey literature, as well as ongoing dialogue with stakeholders, a program theory will be developed to explain who benefits from cancer online support groups and who does not, what benefits they derive (or do not), and the factors that affect these outcomes. Ethics and dissemination The use of secondary data for this review precludes the need for ethical approval. Dissemination will be informed by the knowledge-to-action framework and will consist of tailored knowledge products that are conceived of collaboratively with stakeholders. These will include peer-reviewed publications on how cancer online support groups can be optimised and best practice recommendations to maximise the benefits experienced by people with cancer. These traditional scientific outputs, along with their respective evidence summaries, will be amplified through strategic social media events hosted and promoted by knowledge users. PROSPERO registration number CRD42021250046.

Introduction Mayo Clinic Connect is an online community of over 100,000 members who support each other through sharing lived experience when facing and managing new diagnoses. The community is moderated by Mayo Clinic staff and volunteer patient mentors. Methods Mayo Clinic breast clinic patients undergoing evaluation received a binder of support resources including a brochure about Mayo Clinic Connect at visits between January and May of 2019. Surveys were distributed at subsequent visits between May and December of 2019 to assess patient awareness about the online resource, participation frequency, purpose of use, and benefits for members, as well as reasons for not joining (non-members). The primary aim was to assess patient resilience, coping, and self-management after joining the online community. Results Nine hundred surveys were distributed, and 102 participants completed surveys between May and December 2019. Forty-five percent ( n = 46) had heard about Mayo Clinic Connect; 34% ( n = 15) through a brochure. The remainder heard about the community from a Mayo Clinic provider (43%; n = 19) or other resources (22%, n = 10; no response n = 2). Twenty percent ( n = 20) of survey participants registered as Breast Cancer group members, and most of this subgroup (55%; n = 11) reported understanding diagnosis, treatment plans, and finding peer support as reasons for joining. Seventy-five percent of Mayo Clinic Connect participants ( n = 15) reported the community met or exceeded expectations. Conclusion This pilot study reveals the potential positive impact of introducing an online peer support group into clinical care plans for patients coping with a new and anxiety-provoking cancer diagnosis.

Background: Cancer patients are at risk for hiccups, but the incidence and impact on quality of life are unclear. Methods: A survey (modified from the Functional Living Index with the inclusion of qualitative elements) was developed and launched on an 80,000-member medical social media platform, Mayo Clinic Connect https://connect.mayoclinic.org/ . Results: Among 213 respondents, 34 (16%; 95% CI: 11, 22%) reported “yes” that they had experienced hiccups with cancer therapy. Of those patients who reported hiccups, only 12 (35%) were men, and most were older than 50 years of age. Over 25% noted that hiccups occurred frequently around the time of cancer therapy; 30% described that hiccups interfered with their leisure or recreational activities; and over 15% described hiccups interfered with their ability to enjoy a meal. A few patients seemed to express frustration with hiccups with comments such as, “Totally uncontrollable,” “It’s extremely pain[ful] with throat cancer,” and “Once I had them bad. Almost choked.” Conclusion: Hiccups occur in16% of patients who are receiving cancer therapy and, by our estimates and extrapolation, appear highly problematic in approximately 5%.

Twitter use has increased among patients with cancer, advocates, and oncology professionals. Hashtags, a form of metadata, can be used to share content, organize health information, and create virtual communities of interest. Cancer-specific hashtags modeled on a breast cancer community, #bcsm, led to the development of a structured set of hashtags called the cancer tag ontology. In this article, we review how these hashtags have worked with the aim of describing our experience from 2011 to 2017. We discuss useful guidelines for the development and maintenance of health-oriented communities on Twitter, including possible challenges to community sustainability and opportunities for future improvement and research.