North East London Integrated Care System Research Engagement Network
Download (PDF 9.58 MB)Summary of report content
Healthwatch Waltham Forest, alongside Healthwatch organisations across North East London, undertook research on public attitudes towards participation in health and care research. They engaged around 300 people at community events, received 433 survey responses and drew on feedback from more than 1,000 residents through the North East London Big Conversation programme.
The research found high levels of interest in taking part in health research, particularly among people with more complex health needs, disabled people, LGBT+ people and those with long-term physical or mental health conditions. Participants said they were more likely to engage when research was accessible, relevant to their lives, communicated clearly and involved honest discussions about benefits, risks and how personal data would be used. Lack of time, concerns about side effects, distrust of research and worries about disruption to treatment were the most common barriers to participation.
Participants emphasised the importance of engaging seldom-heard communities, providing information in different languages, making participation convenient and overcoming barriers related to disability, poverty and digital exclusion. Trust was identified as a key factor, with people wanting transparency, confidentiality, opportunities to ask questions and feedback on how their involvement had influenced outcomes. Many also felt that community champions and people who had previously taken part in research could help increase awareness and encourage participation.
The report developed a Good Care Framework for research based on four principles: research should be accessible, competent, person-centred and trustworthy. It recommended engaging communities through trusted local organisations, providing flexible participation options, improving cultural competence, communicating research findings and impacts back to participants, and ensuring diverse communities are represented throughout the research process.