Why healthcare professionals should use the Research Support Network

The Parkinson’s UK Research Support Network (RSN) connects people who want to stay up to date with Parkinson’s research. The network gives you and your patients access to opportunities to get involved in shaping and taking part in research, straight to your email inbox. Read on to discover how Annette has worked with the RSN and what tips she has for sharing research opportunities with your patients.

Annette works at The Newcastle upon Tyne Hospitals NHS Foundation Trust and Northumbria University.

Annette: I’ve been a Parkinson’s Nurse in the North East of England since 1998. I’ve also been involved with multiple research studies and teach post graduate courses in Parkinson’s, clinical research and research impact. Now, I divide my time between clinical practice for people with Parkinson’s, research, and education.

Why do you think it’s important for healthcare professionals to ensure their patients have access to information about research opportunities?

Annette: We know there is a lack of women and people from ethnic minorities taking part in research. And, for example, we should never assume that someone with advanced Parkinson’s wouldn't want to take part in research.

It's important that we, as healthcare professionals, are not just reserving conversations about research for people who are already putting their hand up to take part. We need to actively talk to every patient to make sure every person with Parkinson’s is taking part in research and their voices are heard. Everyone should have an equal opportunity to take part.

It's important to give patients the understanding that research opportunities are vast and varied, and there is a whole world of opportunities out there.  

I let them know not all research involves a big time commitment and visits to a research centre or hospital. It could mean just doing a quick questionnaire.

There are lots of ways to be involved in research too. One way is taking part in studies, another is being involved in shaping research, or even reading research news and attending events.

It’s amazing that we have the Research Support Network as a place to get these varied research opportunities out to everyone.

How is research involved in your role as a Parkinson’s nurse?

Annette: I see research as part of routine care. So I make sure it’s part of my, my team’s and our patients', everyday clinical practice.

As a nurse, I can identify patients who can take part in local research studies, or signpost patients to places they can find research to take part in themselves, like the Research Support Network.

I’ve also been a principal investigator (PI) on research studies. I think it’s really important for some research studies to be led by non-medics.

Do you think Parkinson’s nurses are key in giving patients access to research?

Annette: It’s definitely a team effort. But Parkinson’s nurses do have more continuity of care compared to, for example, physiotherapists or occupational therapists. We’re able to follow patients taking part in research and support them, and when they’re ready to take part again we can help them find the next opportunity. I always check in with my patients by asking "How did the research go?" and "What was taking part like?".

We build trust with patients through time with them. I’m able to explain research opportunities in a friendly way, and the information is coming from someone who my patients know, who they can trust and have confidence in.

I think all specialist nurses should be involved in research at some level.

In our team, Parkinson’s nurses, neurologists, and allied health professionals all have ‘research opportunities’ on our checklist. I think it’s really important that, as a team, we all have research on our agenda and we’re offering opportunities to take part during any contact with patients we have.

How does being a Research Support Network member help you in your role?

Annette: It gives me awareness of what research opportunities are available for patients nationally. Things they can take part in online or on the telephone. It also informs me what research engagement activities patients can get involved with, such as research interest groups or research events.

For me, it’s great to horizon scan and find out who’s doing what research across the UK. It’s nice being able to feed back to patients that there is research happening in a particular area that is important to them and might benefit them in the future.

The network is also beneficial for clinical practice. Sometimes when I have a clinical problem I’ll think "Oh! I know there's a team doing this kind of work in another part of the UK. Watch this space!".

What feedback do you get from patients who have taken part in research?

Annette: In my experience, taking part in research is so beneficial for patients. Even if patients don’t have instant benefit, they’re able to help to build research evidence, give something back to the Parkinson’s community, and help future people who are diagnosed with Parkinson’s.

Patients are pleasantly surprised when there are research opportunities available that aren’t invasive, or opportunities that can have a big impact on quality of life.

Usually, once patients have taken part in one research study, they say ‘"Can I take part in next?". But if someone says "No Annette, research isn’t for me", that’s also fine. I just let people know they can change their minds if they want to.

How do you find time in clinic to talk to patients about research?  

Annette: It’s always going to be difficult to balance the amount of time to talk about research during clinics, alongside everything else. But it’s important to recognise that research is an important aspect of the care we should be providing.

Making sure that patients are getting the most out of their consultations is important. We use prompt sheets that include an option for patients to tick if they’re interested in research.

You can have a very quick conversation, for example, "I see you’re interested in research. Do you know about the Parkinson’s UK Research Support Network?". It doesn’t have to be lots of information and you don’t need to go into any great detail of specific research studies.

What would you say to healthcare professionals without research experience? 

Annette: Research active organisations produce better outcomes for people, staff and patients. Healthcare professionals don’t need to be directly involved in the delivery of research to gain these benefits. We can gain these benefits just by being aware of what research opportunities are available and talking to patients about them.  

If there’s a study happening in your area, you don’t need to know the full details. You just need to know where to signpost patients to get the right information, either the research nurse in your area, the Parkinson’s UK research team, or the lead researchers of the study.

I know research can be scary from the outside. Many newly qualified Parkinson’s nurses may not have had the opportunity to be involved in research before. All I would say is dip your toes in the water. Get involved, there's a whole range of research experience in the Research Support Network at all levels.

We’re all in this together and everyone has to start somewhere. The Research Support Network is a great central place to help bring us all together. Get involved! It’s really beneficial.