Involving communities and clinicians in dementia research
In 2018, Leeds registered more people with a diagnosis of dementia to the Join Dementia Research service than any other Clinical Commissioning Group area in the UK. Here, Leeds and York Partnership NHS Foundation Trust (LYPFT) share a double initiative involving internal clinicians and local communities.
Over the course of a year, there was a 96% increase in sign-ups of volunteers with dementia in the area. This placed Leeds among the top 20 CCG regions in the country registering patients with dementia as a proportion of all patients affected in the region.
The increase followed a concerted effort by LYPFT’s research team which focused on two initiatives: outreach work in different community settings across the city and simplifying the process of signing patients up for dementia research in the Trust’s own memory services
At the start of 2018, the Trust’s research officers, including Clinical Studies Officer Holly Taylor and Research Programme Manager Crystal-Bella Romain-Hooper, visited 15 memory cafes throughout the city to spread the word about Join Dementia Research. Memory cafes are welcoming social gatherings that allow people with memory loss and their loved ones to connect, socialise and build new support networks. There are several in Leeds, offering help and friendship to the communities they serve.
Holly Taylor remembers: “We joined people in their local communities for a cup of tea whilst having conversations about research. We spoke to people with dementia, their families and community volunteers about the benefits of research and how they could get involved via Join Dementia Research. We supported some people to sign up at the time, leaving others with leaflets and information to decide later.”
The team also visited other community events to spread the word, including a Research Café held alongside West Yorkshire Playhouse’s performance of ‘Every Third Minute’ at Seacroft Grange Care home, and a dementia event held by Leeds Irish Centre. An added benefit is that many of the community organisations approached subsequently put information about Join Dementia Research on their websites, information leaflets and newsletters.
Working with Memory services
LYPFT supports a large and varied portfolio of National Institute Health Research (NIHR) dementia research studies. Whilst this presents many opportunities in terms of giving NHS patients choice in the types of research they become involved with, it also comes with its challenges. The team wanted to simplify the process of clinicians talking about research to patients and their carers or family.
Although the team want clinicians to be engaged in offering research opportunities to service users, since there are often a broad range of studies that are recruiting, it was felt unfair to expect clinicians to keep in mind the details of all of the details, their criteria, and have enough knowledge to answer questions.
Clinicians were, therefore, requested to ask two simple questions of every patient: ‘Would you be interested in finding out about dementia research in our NHS trust?’ and ‘Would you be happy for me to pass your details on to the research team?’ This takes the onus of clinicians in terms of having to explain individual studies to their patients and allows the research team and people with dementia to connect directly.
The National Institute for Health and Care Excellence (NICE) guidelines updated in 2018 stated that all people with dementia should be advised of research studies in which they could participate in as part of their care. It is therefore important that research is embedded as part of routine clinical practice.
Keen to implement this guidance, the LYPFT research team created opportunities for service users to access information about research via a variety of means at different points in their care pathway.
Research noticeboards were installed in waiting areas Trust clinic sites. These acted as a clear and simple signpost with information about Join Dementia Research, recruiting studies and ways to get in touch with the Trust research team
The team created pocket-size ‘research referral forms’ for staff as a prompt to start research conversations, alongside a document that is updated monthly with summaries of the trusts recruiting NIHR dementia research projects which is circulated to all clinical staff These regular reminders led to a corresponding increase in referrals to the research team coming via clinicians.
Information about the trusts current dementia research projects and Join Dementia Research service were also included in Post Diagnostic Support packs given to patients following a diagnosis of dementia. These small but significant initiatives ensure that people were able to access information about research before, during or after their memory service appointments.
Closer working relationships
Finally, research team members attended the Trust’s monthly memory services communications meeting on a regular basis. This meeting brought memory service staff together from across the city to discuss service-wide issues. The same member of the research team attended this meeting as a consistent presence so as to foster individual relationships with clinical staff.
As well as creating closer working relationships, the team’s presence at these meetings meant they formed part of the agenda, the ‘normal business’ of the meeting. It was a good opportunity to exchange information and share the positive impacts of research with clinical staff. When clinical staff understand how it will benefit their patients, they can be more motivated to have those initial discussions.
- Getting out to visit people in their own communities allows relaxed conversations about research and can build a network of partner organisations
- Creating a research culture in a Trust is an ongoing and lengthy process so persistence is important
- Find the right meetings to attend to communicate your message – and go regularly so you become a familiar presence.
- Provide information at different points in a person’s care pathway and keep it simple