In this series - The Pain Clinic - Kate O’Brien, formerly a senior research nurse and now a site consultant, examines the most common problems facing clinical trials today and what the potential solutions to them are (read the previous posts here). This week she looks at research awareness amongst patients.
It is known that a lack of research awareness is a major barrier to clinical trial enrolment. A small survey at my previous site of research-naïve patients attending for a flu vaccination demonstrated that 40% were not aware that the Practice participated in clinical trials. The positive finding however was that 80% of these were interested in being involved. This site had been highly active in research trials for over 15 years which illustrates there is a failing within the medical profession in discussing clinical trial participation with their patients.
There are measures that can be taken at a site to increase research awareness. Committing time and resources at this stage can lead to an increased database of potential participants, shortening the time needed to recruit to target.
Screens in waiting areas could show short videos and clips of patients talking about their experiences in trials. The National Institute of Health website contains a number of personal stories, so it is important to select experiences that are relevant to the type of patients attending your site. Similarly, NIHR’s I Am Research site contains a link to video stories from patients involved in clinical trials
To support this, information should be provided for patients to take home and sites can provide links to their own website as well as other useful organisations. The NIHR provide I Am Research leaflets, but probably most importantly patients need a contact with a member of the research team.
Sites could run Open Days with sessions for anyone to drop in to meet the team and find out what taking part in a study involves. This needs to be widely advertised, not just at the site but also in local pharmacies, on local radio and in supermarkets to ensure a good attendance.
National Health Awareness days offer opportunities for research teams to engage with the general public. For example, promotion for Diabetes Week could include drop-in sessions for patients to have their height, weight, BP and blood glucose checked. Distribution of packs containing lifestyle advice by the staff offer the opening to discuss participating in studies.
Patient feedback and public perception
A useful tool is to have a “Positive Comments” display. I conducted an anonymous survey of trial participants to identify areas where improvement could be implemented. The number of positive comments received was gratifying and these were collated into a display to inform and reassure those new to research.
This led to a further initiative. Recognising the commitment patients had to research and their feelings when a trial came to an end, I started a Research Interest Group. In the first six months they ran a focus group for a company providing a payment system, trialled an eConsent programme and looked at the research ambassador role. These are the people who can help to increase research awareness. Local groups, the Women’s Institute, the U3A are always looking for speakers; you could offer to give a talk and if a patient is happy to help it gives an added dimension. Encourage your patients to talk to friends and family about their experiences, there is a need to demystify research and normalise trial participation.
Going a step further would involve bodies at a national level. Join Dementia Research is a national service for anyone to register an interest in participating in dementia research and matching them to suitable studies. Often people are interested in being involved in research but do not know how to find out how to do this or what trials are available. The UK Clinical Trials Gateway is currently being redeveloped but does offer this service. It needs to be widely promoted, perhaps as part of health screenings and chronic disease reviews it should be mandatory for a discussion around the benefits of registering for this service to be discussed with QoF points attached.
As a research nurse one barrier to recruitment was the public’s negative perception of clinical trials. Patients often referred to “being a guinea pig” or the 2006 incident involving a Phase 1 trial of TGN1412. It is difficult to reassure not only the patient, but also their family about how rare it is that problems occur especially when there are so few constructive articles in the media. I would love to see one of the main soap operas run a storyline about a character with a chronic disease such as type 2 diabetes, psoriasis, or asthma for example taking part in a trial and the positive outcome this can have on their life.
Positive patient comments
To end this first article I would like to share a few of the positive comments I received from patients:
“Taking part in the research was one of the best decisions I’ve ever made. I was dubious at first, as I didn’t think anything would work for me, but after the first injection I noticed a change."
“Due to the fact I struggled with any degree of self-control, my health suffered. I was also unaware of the serious nature of Type 2 Diabetes and the contribution my lifestyle choices had made. Thank you for the opportunity to take part in the Pioneer 3 clinical trial, the help, guidance and time you have given has been of immense value. Your encouragement and support are most appreciated.”
“When asked if I would like to participate in a recent research study, at first I was unsure. After the first meeting with the team involved I was put at ease. All questions I had been answered, I felt, with confidence and honesty. Appointments were made to fit around me. I came to enjoy the feeling that the research I was participating in could one day help other people and me too. For anyone considering taking part in a research study I would say, go along for a talk with the Doctor or nurse, it costs only a little of your time but could one day have a huge impact on medicine.”
“Since starting the trial I have been much happier in myself, more confident and generally have felt healthier. Should I be asked how I feel about doing the trial, I would recommend it to anyone knowing how I feel regarding being involved and hope this helps sufferers in the future, and the fact I have a great team behind me should I need help.”