There's quite an infrastructure in place for larger scale trials with clinics being recruited as enrolment centres and so on, with a readymade stream of eligible patients who can be invited to take part (they can of course say no!). There is also a variety of brokering-type arrangements where people interested in taking part in clinical trials can register with organisations and hear about trials taking place.
For smaller projects - often as part of a university course (masters / PhD) or even a funded project with a patient involvement component it can be a little harder to find patients.
Here are some suggestions on finding suitable participants
- Probably you'd need to cultivate 'gatekeepers' (community leaders, or people who are in contact with your chosen 'quarry') given that people with a given health condition are more widespread. At Diabetes UK we reached people with diabetes directly and indirectly - directly
through our website and social sites (and them just getting in touch) but a
hugely important route
was via nurses and doctors who'd pass on our leaflets to them. This is also very useful for people who are less comfortable using online options - so GPs' / nurses surgeries and clinics are also a good place to ask, and may have a notice board (ask before pinning stuff up!)
- Contact the relevant patient charities and support groups (eg if you wanted 'heart patients' an obvious place to start would be the BHF, but also diabetes is a cardiovascular disease so diabetes charities also relevant). These charities often have voluntary groups which get together and raise funds and in doing so support one another, share information and have talks from researchers (you, perhaps)
- Have a look at research literature on similar topics and see what
avenues were fruitless / fruitful. I worked on a project looking at medical device safety and colleagues worked hard to find 'people with high blood pressure' or 'people with diabetes' to take part in workshops looking at how new devices are developed - the actual device bit was fairly straightforward in comparison!
- Different universities have different arrangements with people 'outside'
of the university (eg schools talks programmes or widening
participation liaison, public lectures for adults, other public
engagement activities and so on) so staff outside your department might
be a useful starting point. Some unis will have a Patient and Public
Involvement liaison person, or the Public Engagement team might cover
this function.
- Some unis send round opportunities for staff to get involved in staff-run research / trials, ask if you can use that to ask staff to invite non-staff friends to get in touch.
- The CHAIN network (Contact, Help, Adviceand Information Network) can put you in touch with people working in health and
social care, though not patients directly (again, gatekeepers).
- NIHR Involve supports public involvement in NHS, public health and social care research. There are also specialty groups (Eg cancer, diabetes etc) https://www.nihr.ac.uk/explore-nihr/specialties/
- In the wider community think about where else community noticeboards can be found - gyms, newsagents, supermarkets, libraries, town halls, community centres, faith groups etc.
- Community groups - these might have nothing to do with any particular health condition but cater
for kids or older adults - eg Good Gym,
the Shed thing for over 50s men, women's institute, film clubs,
Nextdoor etc.
- Schools - they have children, parents and teachers some of whom might have the condition. Again another potential source of community bulletin boards!
- Online bulletin boards - Mumsnet etc. Also groups on Facebook and 'communities of practice' around hashtags on Twitter / Instagram.
- Write a blog post or article about your project's aims (or perhaps a series of posts) and share that link periodically on Facebook and Twitter with relevant hashtags. For Instagram use a bitly link as links aren't clickable (unless put in bio) so people will have to type in, you can also use this to see how many people are visiting the bitly link (metrics!).
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