ROAM: an online platform that links patients and clinicians with research

Introduction

Research is vital to the NHS and has a huge positive impact on clinical outcomes. Involvement in research can allow patients to play a more active role in their own healthcare, as an increased understanding of personalised clinical information enables them to fully participate in the management decisions and care-planning of their condition. It also enables patients to gain access to new treatments before they are widely available.

Moorfields Eye Hospital NHS Foundation Trust is the leading provider of eye health services in the UK and a world-class centre of excellence. As a National Institute for Health Research (NIHR) UK clinical research facility (UKCRF), it is also a research active site. Yet we knew that awareness of our research opportunities was poor among staff and patients and that less than 2% of patients participated in research.

This is despite the government white paper Equity and Excellence: Liberating the NHS (Department of Health and Social Care, 2010) stating that it is committed to “the promotion and conduct of research as a core NHS role” and that “research is vital in providing the new knowledge needed to improve health outcomes and reduce inequalities”. The NHS Constitution has also pledged that patients have “the right to be given information about treatment options available” and informed of research studies in which they are eligible to take part. I was keen to improve this, and when I was awarded an NIHR 70@70 Senior Nurse Leader post in 2019, I made it my goal to embed a research active culture within the trust.

Lack of awareness

A UKCRF network research awareness survey in 2018 found a third of patients and relatives had no idea that we were a research active organisation; and 66% of patients and relatives said they have never been approached about taking part in research.

Among staff, most (92%) knew we were research active, but a third could not signpost people to information on research. We also found that 50% of staff did not believe their role supported health research, including communicating to patients about it. The survey showed that staff on lower bands (Agenda for Change bands 3-5) had less awareness about us being a research active site and their role within that.

The research team also received hundreds of queries a month about research at Moorfields, yet there was no mechanism in place to document expressions of interest. We also knew that information on the website was hard to find. In 2018, when we published groundbreaking and widely publicised research showing a treatment for severe age-related macular degeneration, we received 400 calls a day to the department and were unable to meet demand.

We set a goal, not only to improve understanding among staff and patients, but to increase the visibility of research within the organisation, increase patient enrolment in clinical trials and provide a platform to coordinate patient interest.

“This is a great initiative which will enable patients to access opportunities to participate in clinical research, thereby enhancing their care outcomes” (Judges’ feedback)

Developing an online platform

To meet these challenges, we first did a programme of work around communication and training for all staff on what research is, how it works at Moorfields Eye Hospital, the staff’s role in this and how to signpost patients and members of the public for more information. We worked to increase the visibility of research programmes in key patient areas, such as reception, kiosks, and the health hub.

I also proposed an online platform that allows members of the public and patients to easily register their interest in research opportunities. Depending on their area of interest, their details are compared with the eligibility criteria of studies open to recruitment at Moorfields, so they can be invited to participate. It also makes it simpler for clinicians to find out about and refer patients to relevant studies.

After approval by the trust board, the ROAM (Research Opportunities At Moorfields) platform was launched in September, 2020. The multidisciplinary team working on the project involved patient groups in both the design and implementation of this project, which had support from our in-house NIHR-funded research IT team. The platform went through several iterations and was assessed by staff and patients throughout its development.

Once completed and available for use, we promoted ROAM via internal staff communications, patient information screens, research link nurse meetings, external talks and conferences, charity communications, and patient magazines.

Additionally, an algorithm was created to direct all telephone and email research queries to the ROAM platform. We make sure patients are not contacted too frequently about studies; the platform can also identify if a participant is a past or present patient of Moorfields and has an easy opt-in or opt-out function. It is functional on mobile so that research nurses in clinic can help patients find the right study for them with speed and ease.

Results

To date, ROAM has been a success and we are not aware of any other platform that provides this service and is also integrated into a hospital’s clinical networks. Nursing and medical staff will be able to quickly find and review the synopsis and eligibility criteria for studies open to recruitment so as to offer patients a further treatment option. Also, patients can find out more about our research and register their interest.

The site has between 150 and 200 unique IP address visits per month. By the end of October 2021, over 300 people had signed up to ROAM to participate in research due to an eye condition, as a healthy volunteer or to take part in patient and public involvement and engagement activities. We also know that almost 60% of the volunteers are non-Moorfields’ patients, showing the large national and international reach of the project.

Our nurses are now able to speak to patients about research with more authority and information. It has also increased communication between research and clinical teams. Both teams are now part of the research pathway and understand that research is everyone’s business. The innovative platform aligns with both the NIHR Clinical Research Nurse Strategy 2017-2021 (NIHR, 20219) and The Topol Review (Health Education England, 2019), which concluded that digitally enabled services can enhance patient outcomes.

What next?

Our hope for this initiative, which has already dramatically raised the profile of Moorfields’ research activities, is to promote further integration of clinical and research services within the trust. We also believe that having an identified population through the platform, interested in taking part in research for a specific eye condition, will attract funding and sponsors for future studies.

Covid-19 did delay the roll-out of ROAM, as research nurses were redeployed, but it also cemented the case for ROAM’s existence. Before the pandemic, our recruitment depended quite heavily on face-to-face contact with patients in clinic. During the pandemic, there was a significant decrease in the number of in-person, face-to-face appointments, which in turn decreased our recruitment opportunities. We now do a significant amount of virtual recruitment, with many patients coming to remote clinics off-site and in community optometry premises as an important part of maintaining and improving accessible services post-Covid-19.

We acknowledge that there is more work to be done with getting patients on the platform and this will be addressed as clinical services resume post-pandemic. We also intend to look at making the platform accessible in languages other than English.

The ROAM platform template has since been used to develop our staff Covid-19 vaccination programme. Our next goal, as well as continuing to develop the platform, is to share the work with others in the UKCRF network to help them implement a similar strategy in their own research centres.

Conclusion

We developed a novel platform to make it easier for patients, communities, and our staff to discover and participate in research. Every day the ROAM inbox is full of people registering their interest and wanting to know more about research at Moorfields Eye Hospital. Staff are empowered to provide information and help link patients with relevant clinical studies. This has met a key aim of the 70@70 Senior Nurse Leader Programme by embedding a research active culture to improve quality of care and patient outcomes.