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Direct to Patient Recruitment

Public Group active 4 months ago

A sub-group of the Research Innovations Working Group (RIWG) to study the landscape of tools and resources around Direct to Patient Recruitment, evaluate existing tools and/or develop common tools, promote collaboration and promotion of tools across PCORnet, the RIC and beyond.

Annotations: ABOUT Network: Hereditary Cancer Research Matching Tool

This topic contains 0 replies, has 1 voice, and was last updated by  Sue Friedman 1 year, 1 month ago.

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    Sue Friedman


    This resource from the ABOUT Network  is a set of webinar slides that describes pilot efforts to identify the barriers and facilitators to patient participation in hereditary cancer clinical research and development of their Research Study Search Tool: a Direct-to-Patient matching tool and accompanying resources specifically for patients affected by hereditary cancers. ABOUT developed this tool because people with inherited mutations represent a hard-to-reach minority population among cancer patients. Studies specifically enrolling people with inherited cancers may compete with larger studies with broader eligibility for patients. Matching the hard-to-reach people into the studies with specific and narrow eligibility first allows those studies a better opportunity to meet enrolling goals. The tool was developed by and for patients with HBOC.

    Guiding principles include:

    1. Patients are more likely to express interest and participate in a study if they understand the study and eligibility. This resource summarizes the study and eligibility in plain language, provides visual clues, and a dynamic glossary to make the information accessible to patients.
    2. The tool includes resources to assist patient use of the tool including: access to trained peer navigators, answers to frequently asked questions, general information about clinical research, protections, and decision-making
    3. The tool includes a custom database of studies with specific relevance to people affected by an inherited mutation associated with hereditary cancer. The matching tool searches both the custom database and and provides matching results from both databases.
    4. The search tool can be personalized by:
      • type of study
        • treatment
        • genetics/prevention/detection
        • quality-of-life/wellbeing
        • registries/surveys
      • cancer site/stage
      • mutation type
    5. The network uses multiple strategies for disseminating information about the tool, including:
      • Social media promotion
      • Promotion via email bulletins to network members
      • Integration of tool and specific studies into other support and education programs and content
      • Development of print collateral material that can be distributed through volunteers, clinicians, and facilities.


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