Table 1.
Developing successful community engagement programs: lessons learned
| Lesson learned | Case study | Examples |
|---|---|---|
| Address a clear need shared by multiple stakeholders | Saint Jude Affiliate Program, USA | Need to improve outcomes of cancer treatment irrespective of location |
| Legally-authorized representatives, West Africa | Need to recognize and identify legally-authorized representatives of minors for research conducted during humanitarian emergencies | |
| Youth Trial Boards (United Kingdom, South Africa, Uganda, Zimbabwe) | Need to engage young people in the design and implementation of clinical research about them | |
| Develop a clear, relevant vision and mission | All cases | Cross-cutting all cases |
| Understand the role of culture in organizational change | Saint Jude Affiliate Program, USA | Choose an affiliate partner that is committed to their community and consistently energetic about engagement |
| Youth Trial Boards (United Kingdom, South Africa, Uganda, Zimbabwe) | Selecting core staff with a passion for working with youth embedded the project with the ethos of youth engagement | |
| Changing institutional culture is a long process full of mediation, compromise, and sometimes standing your ground | ||
| It is important to manage young people’s expectations about how rapidly culture shifts | ||
| Community engagement requires an investment mentality | Saint Jude Affiliate Program, USA | Establishing sites was a 18- to 24-month process |
| Youth Trial Boards (United Kingdom, South Africa, Uganda, Zimbabwe) | The YTB is an iterative model that is still being shaped | |
| Develop and apply a structured approach | Saint Jude Affiliate Program, USA | Formative assessments are coupled with ongoing site reviews |
| Legally-authorized representatives, West Africa | The LAR document was developed using a Delphi consultation process | |
| Youth Trial Boards (United Kingdom, South Africa, Uganda, Zimbabwe) | A literature review and formative research with young people informed development of the preliminary model | |
| Deploy strong operational and project management | All cases | Cross-cutting all cases |
| Identify and deploy appropriate resources | All cases |
Staff/Administration Champions/owners within sponsoring organization Appropriate timelines |
| Saint Jude Affiliate Program, USA | Educational opportunities are available for community partners | |
| Youth Trial Boards (United Kingdom, South Africa, Uganda, Zimbabwe) | Each project site has a multidisciplinary core team with staff who have prior experience working with youth | |
| Members of the core team are trained to engage with clinical trials | ||
| Leverage community resources | Saint Jude Affiliate Program, USA | Community resources include patient navigators, a family advisory committee, and digital health tools |
| Youth Trial Boards (United Kingdom, South Africa, Uganda, Zimbabwe) | Program resources include a referral system for other services to address overall well-being | |
| Communication must be authentic, transparent, and ongoing | Saint Jude Affiliate Program, USA | Information is exchanged on a variety of schedules using a variety of methods about levels of engagement, processes, and outcomes |
| Legally-authorized representatives, West Africa | The project will solicit public comment via an online survey that will be open to the global public for 6 weeks | |
| Youth Trial Boards (United Kingdom, South Africa, Uganda, Zimbabwe) | YTB team members provided feedback on patient information sheets which resulted in development of youth-led information materials | |
| Community engagement is built upon trust | Saint Jude Affiliate Program, USA | Relationships were built through mutual professional interests leveraging existing systems at the time |
| L Legally-authorized representatives, West Africa | Recruitment of project participants was achieved through existing networks (bioethicists, pediatric health researchers, and pediatric health policy makers) | |
| Youth Trial Boards (United Kingdom, South Africa, Uganda, Zimbabwe) | Trust and respect must be established before young people can truly influence and effect change | |
| Success builds on success | Saint Jude Affiliate Program, USA | Be guided by well-defined success that is communicated effectively |
| Manage a portfolio that provides payback to all stakeholders | ||
| Build the case for novel approaches | Youth Trial Boards (United Kingdom, South Africa, Uganda, Zimbabwe) | It took time to secure the industry funding for the project |
| Plan sustainability | Saint Jude Affiliate Program, USA | Identify outcomes that are most important to stakeholders |
| Maintain buy-in through self-directed improvement and ownership of projects by stakeholders | ||
| Legally-authorized representatives, West Africa | Develop a targeted intervention with an exit strategy | |
| Youth Trial Boards (United Kingdom, South Africa, Uganda, Zimbabwe) | The project is developing quality standards on youth engagement that will allow assessment of the impact of YTBs | |
| Develop global strategies that work locally | Legally-authorized representatives, West Africa | The project is developing a regional (West Africa) LAR document that allows country-level adaptation |
| Youth Trial Boards (United Kingdom, South Africa, Uganda, Zimbabwe) | This was a multi-national project that required developing practice agreements with partners that complied with country-specific regulations and laws |