Community led engagement and research project

Healthwatch Herefordshire worked within Herefordshire communities to raise awareness of health and social care research and promote how people can get involved. Recording views, opinions and ideas on the best ways for communities and individuals to participate in research projects long-term and create change. The project primarily focused on engaging people living rurally, farming communities, domicile traveller communities, unpaid carers and anyone struggling to engage with regular healthcare checks and screening.  They undertook a survey to which 94 people responded.

Trusted advocates are the key to engaging individuals and groups and building relationships within communities. 

It would be beneficial to have an active individual within each community group who has either been trained and research ready or has an interest in research to inspire others to get involved, acting as the interface between the community and researchers. 

 Most people do not understand what health and social care research is when asked, in most cases they think it’s about clinical trials. A more flexible approach to opening up the discussion should be taken, about general health first and then leading onto the research element. 

Engaging people in health and social care research has to be less academic focused. Language, materials and conversations need to be more people centred and resonate with their lives and experiences. Events like health quiz nights can open the door to discussions about research and educate those taking part. 

Feeding back to those who have taken the time to participate in the project is absolutely crucial, particularly with those in the seldom heard category. It is important that individuals are valued and that they hear back from us as to how their participation made a difference. It encourages people to stay involved and want to contribute again in the future. 

People have a preference for 1:2:1 sessions rather than groups, mostly due to lack of confidence and knowledge regarding the subject of research. 

Most people report that their motivation for getting involved in health and social care research is to make life better for others. 

Any research engagement needs to be more than one session, investment into building relationships with individuals and groups needs to factored in to ensure sustainability otherwise researchers have to start from fresh each time they want to consult the public around a topic. This can take a considerable amount of time and effort. 

There are multiple barriers for hard to reach groups, the most obvious ones are language and trust. Literature must be designed to include and explain research more simply. 

Interpreters must be chosen carefully and confidentiality considered. 

Carers are time limited and only have small windows of opportunity to participate and this may not be on a consistent basis given their situation. 

Health partners and other charities have been very helpful in informing their clients about this research project. Working with the general practice Taurus Talk Wellbeing Hub has been very fruitful, collaborations have been formed to enable easier reach into communities. 

Individuals from the veteran community can take longer to engage, many have been out of the loop and there is a lot of mistrust. Contact needs to be consistent and steady. 

The GRT community are difficult to engage even through trusted sources and it requires considerable time to establish relationships and trust before they will participate. The community reports being fatigued from requests for their views from various organisations where they do not then hear back about whether their contribution made a difference, or promises are not kept. Individual community members have reported being stigmatised by their own community for offering their support to agencies, which has subsequently resulted in them withdrawing their participation. In Herefordshire the few professionals who have been consistently working with this cohort and are trusted have been very helpful although cautious in order to protect their own relationships. 

Most people are very busy, happy to give a viewpoint or complete a questionnaire but do not have the time to be involved more long term. 

Incentives do not necessarily have to have a monetary value, these can also take the form of sponsorship of community events, coffee mornings, workshops or training.