Patient priorities for a digital health platform to support Lynch syndrome surveillance and research engagement: A needs assessment survey.

Abstract

e22556 Background: Lynch syndrome requires lifelong, multi-organ surveillance and ongoing family communication to enable cascade testing. Despite established surveillance guidelines, patients with Lynch syndrome often lack integrated, patient-centered tools to coordinate screening, prepare for clinical encounters, and engage in research. Precision Insight is a patient-led digital health community in development to support hereditary cancer families in these tasks. We surveyed Living with Lynch workshop alumni to prioritize platform features. Methods: A voluntary, de-identified online survey was emailed to 60 prior Living with Lynch Workshop participants. Respondents selected their top three tasks the platform should make easier and rated proposed features on a 1–5 scale. Survey items were informed by prior Living with Lynch workshops and patient advisory input. Descriptive statistics are reported. Results: Twenty-nine participants responded (48%). Most identified as a person with Lynch syndrome (25/29, 86%); 17/29 (59%) were cancer survivors and 8/29 (28%) previvors. Top priority tasks were screening planner + reminders (24/29, 83%), research/registry explainers and interest sign-up (20/29, 69%), moderated peer forums (17/29, 59%), private family coordination hub (15/29, 52%), and clinic-visit preparation tools (14/29, 48%). Highest-rated features were screening planner reminders (mean 4.52/5; 26/29 rated 4–5) and clinic-visit prep tools (mean 4.24/5; 23/29 rated 4–5), followed by micro-learning (mean 4.00/5; 22/29 rated 4–5) and peer forums (mean 4.07/5; 20/29 rated 4–5). Beta participation interest was high (mean 8.45/10; 22/29 [76%] rated ≥8). Conclusions: Workshop alumni prioritized tools supporting surveillance tracking, visit preparation, peer support, and research engagement. These findings inform Precision Insight’s initial build and demonstrate feasibility for patient-partnered beta testing; broader validation in more diverse Lynch syndrome populations is warranted. Participant priorities and perceived value of key Precision Insight capabilities (n=29). Platform capability Selected as a top-3 task, n/N (%) Rated 4–5/5, n/N (%) Mean value rating (1–5) Screening planner + reminders 24/29 (83%) 26/29 (90%) 4.52 Research/registry explainers & interest sign-up 20/29 (69%) — — Moderated peer forums 17/29 (59%) 20/29 (69%) 4.07 Clinic-visit preparation tools 14/29 (48%) 23/29 (79%) 4.24 Micro-learning (short videos) 2/29 (7%) 22/29 (76%) 4.00 Private family coordination hub 15/29 (52%) — — Participants selected up to three ‘top priority tasks.’ Feature value was rated on a 1–5 Likert scale (5 = very valuable); ‘Rated 4–5/5’ represents respondents selecting 4 or 5. Dashes indicate that a corresponding feature value rating was not collected for that specific task category in the survey.