In November 2015, over 90 participants gathered in Portland and Bend, Ore., to attend SolSurvivors' first Melanoma Community Research Forum. After presentations by researchers on the latest in melanoma prevention and treatment, attendees were invited to join small-group discussions facilitated by trained volunteers. In the small group discussions, participants were asked questions such as: “If you had five minutes to sit down with a researcher, what would you want them to know about your experience with melanoma?”
Following the forum, members of the SolSurvivors Community Engagement Committee listened to recordings of the small group discussions and drafted summaries of themes. In early January, each committee member shared his or her summaries while our project coordinator wrote up themes on a virtual white board. Themes that came up more than once were highlighted, and we finished our meeting by discussing potential research questions that might address issues raised in the discussions.
Themes that we identified as issues of importance for attendees of our research forum in November include:
- Frustration with lack of public knowledge about the seriousness of melanoma
- Lack of confidence in skin exams being conducted by self or provider
- Lack of confidence in being able to detect recurrence
- Missing information, resources, or tools to make informed decisions regarding care
- Felt rushed during treatment
- Importance of advocating for yourself, getting second opinions, or bringing a second person to medical appointments
- Need more resources for emotional support and holistic wellness during and after treatment
- Conflicting information in the community about sun protection and sun safety
- Desire to see more collaboration between health care providers and systems
Download a copy of the full report.
Questions or comments? Contact us at info@solsurvivorsusa.org.
