Patients Know Best?

A blog by Anthony Locke.

I’m a patient with a rare disease. I saw details of the 100,000 Genomes Project in the Spring of 2016. I’m interested in research and have been a volunteer on lots of projects and steering groups. The 100,000 Genomes Project seemed one of the most important developments for medicine.

leaflet for participantsSo, I enquired of the East of England NHS GMC Clinical Director for the Project whether I was eligible to participate. In the Summer of 2016 I was consented and blood taken.

I give talks to various groups: student nurses, pharmacists, at conferences with representatives of GP surgeries patient participation groups (PPGs) and GPs on leadership courses in the region about my experience of taking part in research. Recently, at these events, I have been asking if they know about the 100,000 Genomes Project. Surprisingly, or, perhaps, unsurprisingly, relatively few do. Linked with similar unfamiliarity with my rare disease – GPs may never see a patient with it in his or her career – there is an opportunity for discussing the importance and implications of this major research project.

Patients taking an active role

Whilst many of the participants in these groups may not be engaged in research in their careers,  whether nurses, doctors and other professionals or public members, they have an important contribution to make, not just in being informed, but encouraging fellow professionals and patients of the importance of research. This is, perhaps, where the patient can take a more active role. In the PPGs encouraging GPs to inform patients generally about research and, where relevant specific research for the patient’s clinical condition and, vitally, where appropriate, the 100,000 Genomes Project.

Engaging with nurses and medical students

In the case of third year undergraduate nurses, where there is a “captive” audience of 200, it’s an opportunity to have a modest influence on the role that non-research nurses can play in encouraging their patients to think that research may be relevant to them. Whilst their packed curriculum doesn’t allow much time for familiarisation with the 100,000 Genomes Project, they had at least seen a patient who had a rare disease and had experienced the early stage of the Project.

The most promising development in the past few months has been the involvement of members of the Patient and Carers Group of Leicester University Medical School in an online consultation – Patients Know Best (PKB) with first year medical students. Starting in October 2016, it meant that they were only a few weeks into their undergraduate training. Each patient was allocated a group or groups of about ten medical students. I had two groups. Because we were all new to PKB, in my case it was feeling my way as to how to have a useful exchange and to develop, not just their communication skills, but mine too.

I thought I would make it as realistic a consultation as I could. So, the students began to ask questions about my condition as they might face-to-face in a surgery or clinic. I answered the questions and gradually realised this was developing into a puzzle where pieces of information gave them clues as to my condition through the medication and tests. Because I have a rare disease, they had a tough assignment to identify it. They did so in the last email before the Christmas vacation. In my reply and congratulations, I told them about the 100,000 Genomes Project as I had the student nurses. It was an opportunity for a patient to encourage a new generation of professionals to be aware of the potential for them and patients of, in the long run, more effectively targeted treatments.

Getting involved

Patients in the Project can fulfil a very important role, not only in being ambassadors for it, but in helping new patients. These peer patient champions are able to explain the Project and reassure newcomers of what is entailed for them personally. This support can be extended to a role more integrated into the development of the project itself. As a member of a stakeholder group there can be the pooling of ideas on how to engage groups that may be left out of so many services in the NHS. So, there can be the exploration of the development of community outreach groups aimed at engaging minority and BME members.

Patients, their carers and relatives may have imaginative ideas and connections to help the groups develop ways of promoting the project. A proposal by a stakeholder to have an outreach bus has been enthusiastically embraced as a means of going to centres of professionals and popular public places to give a very tangible and large statement of the importance of the work. It isn’t always easy to get these schemes off the ground, but the lay members in a stakeholder group may have the connections and the relevant experience to drive the enthusiasm. This applies to the development of alternative ways of publicising the work; there will be creative people in the group who can promote visual images to catch the public imagination. There will be the patient stories, which may vividly convey their family history of cancers or rare diseases. These can be the most significant in conveying understanding of the importance the Project.

There are opportunities to get the professionals when they’re young and enthusiastic investigating what the 100,000 Genomes Project is and the implications for their future careers. GPs on the leadership ladder can influence their peers. Patients, not just through PPGs, but in their wider communities, can raise the profile of this Project and promote it as one of educational and financial investment for the future of better targeted medication.

If some assume patients don’t know best, the commitment to the proposition that they do, is a first class incentive for everyone to ensure that they are listened to and involved in their treatment. This is the catalyst that the 100,000 Genomes Project can contribute to professionals and patients alike.

Find out more about how we work with patients and the public, and how you can get involved.