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Helen's story

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Published: 23 May 2019

Version: 1.0 - June 2019

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Interview - Helen Robinson

Helen Robinson is an Advanced Nurse Practitioner from Middlesbrough, who a year ago became one of the first Nurses to become a Principal Investigator of a research study in her Trust in Tees, Esk and Wear Valleys. We interviewed Helen to find out how and why she got involved in clinical research.

What first sparked your interest in getting involved in research?

Despite years of experience as a nurse, I hadn’t really thought about research. Then, about a year ago, we had a discussion at a Trust meeting about how few nurses, compared to other disciplines, were involved in research. It definitely made me think that this might be something I’d like to become more involved in.

Why do you think it’s important for nurses to get involved in clinical research?

As the population grows, it’s important to understand and address changing health needs. Nurses are in a very good position do this, as we have such regular contact with patients. Nurses are also the largest group of employees in the NHS, and we are therefore in an ideal position to promote research. Research can also improve the future care we give our patients, and by having nurses more involved in research, it will ensure that the information researchers and clinicians collect, relates to research questions that really matter to patients. In the PROVIDE study, this was dementia and eye care.

Can you tell me more about the study?

The aim of the study was to measure the prevalence of visual impairment in people with dementia, to identify whether there are any problems in providing eye care for them and recommend interventions to improve eye care. The study findings will be used to update the College of Optometrists guidelines on examining people with dementia and incorporate these findings into training and education programmes.

So how did you become the Principal Investigator (PI) for the study?

I volunteered to be the Principal Investigator, as I felt my clinical background and experience would help to provide practical solutions to recruitment in this field. I was also involved in meeting local recruitment targets as being based in practice I had regular contact with patients.

In the populations that I work closely with, there is sometimes a misconception that just because someone is experiencing memory problems, they have nothing to contribute to research. Nothing could be further from the truth, and this is something I feel very passionate about. Everyone has something to contribute to research and, by getting involved you can become part of the wider development of the treatment, care or services available to patients.

What did your role involve?

The job ranged from the identification and recruitment of patients from my own practice and from local care homes to ensuring that all the correct consent was carried out and that the required approvals and on-going communication with the regulatory bodies involved was carried out appropriately. 

“I would definitely like to continue being involved in research... it’s such a rewarding experience.” 

What are the barriers for nurses in getting involved in research studies?

One of the barriers is lack of awareness and knowledge both for nurses and patients, as well as uncertainty on how to address patient’s concerns. However, the support I received from the Clinical Research Network: Dementias & neurodegeneration (DeNDRoN) really alleviated my own apprehensions as well as my teams, and showed us a good way to approach asking research questions

“As the population grows, it’s important to understand and address changing health needs. Nurses are in a very good position do this, as we have such regular contact with patients. ”

Did you have any specific training for the role?

CRN: Dementias & neurodegeneration (DeNDRoN) were good at mentoring, and I worked closely with Sarah Daniel (Research Manager, NIHR Clinical Research Network: North East and North Cumbria), who was very supportive. It was just helpful to have someone to explain some of the terminology as it was all very new to me.

You are the highest recruiter in the country for this study. How did you manage it?

We more than doubled the number of participants. We used the research ready care home network, which has been developed as part of the Enabling Research in Care Homes (ENRICH) programme, to recruit patients from care homes. As well as the network, we used communication skills and other network forums to spread the word about the study. It was an unusual study as it took place in care homes, but it was a positive experience as it gave residents a voice. I was amazed at how much patients wanted to participate right from the start.

What would you say to other nurses, who might want to get involved in research?

I would say don’t be scared, and don’t be afraid to ask your patients. It’s OK to ask, and there is a lot of support out there. I would definitely like to continue being involved in research, and would put myself forward as a collaborator on studies as it’s such a rewarding experience. Everyone can contribute to the development of treatment, care and services available to patients, and research should really be something that everyone in healthcare thinks about.

www.crn.nihr.ac.uk/dementias

Find out more:

Watch a video with Helen Robinson

Watch a video with Michael Bowen, Director of Research at The Royal College of Optometrists

Watch ‘Practical tips from the PROVIDE study’ with Rakhee Shah