By Liverpool YPAG,
Blog written by Phoebe (20 yr old patient)
This blog is taken from a talk I gave at a Paediatric Rheumatology Trainee Day in the Institute in the Park, Alder 
Hey Children’s NHS Foundation Trust on the 15th January 2016.
I’m originally from Birmingham but I’m currently a 2nd year Medical Student at university here in Liverpool. I am also a Juvenile Dermatomyositis (JDM) patient, I am treated at the UCLH Centre for Adolescent Rheumatology in London and Broadgreen Hospital. I hope to give you a patient’s perspective on research, the benefits of involving young people in research and how we can get more patients involved in the future. I hope this blog convey’s how grateful I am for all your efforts in trying to find out cures for rheumatology conditions.
Firstly I’ll give you a bit of background on my diagnosis. I was diagnosed with JDM in October 2012, when I was 17 and beginning my A-levels. It took a few months for this to manifest. I was treated at the Queen Elizabeth Hospital in Birmingham until I moved to Liverpool last year. Now I am under shared care in both London and Liverpool. Initially for me, a diagnosis with JDM was fairly positive as I was eager to start treatment and get better after having spent so long not knowing what was wrong with me. However, the enormity of such a diagnosis later hit me when I left hospital. As someone that has always been quite healthy and independent, facing the unknown was pretty terrifying. A few weeks after my diagnosis, I started treatment on prednisolone and methotrexate. From here I started to manage my condition and get back into a routine, despite it being slightly different from before!
MY INVOLVEMENT IN RESEARCH
Now a JDM patient of just over 3 years, I have been involved in research in various different ways. As I said earlier I am treated at the Centre for Adolescent Rheumatology in London, I was referred here by my local Consultant rheumatologist. She asked me how I felt about seeing someone that specialised in my condition and I was eager to visit the centre. I was perfectly happy with my care in Birmingham but she had not seen a young adult with JDM so felt I may be able to learn more about something that was such a big part of my life. This was exciting for me as there was little information available for me about my condition at my time of diagnosis, especially regarding adolescents. It’s easy to feel like you’re the only young person with a chronic condition but when you discover that there are others with a range of conditions similar to yours it can be very comforting and reassuring.
Initially I visited the centre every 6 months and attended focus groups. As a patient, it is nice to be involved in a centre like this because you know they regularly see people with your condition and know what they’re talking about. It’s a friendly little community as well, you get to know your Doctors and the other members of the team. It’s something positive to take out of your experience. My first experience of research was with the nurses at UCLH, here I filled in questionnaires and had my blood taken. I later went on to attend focus groups and I am now a member of the Advisory board at the Centre. I act as a patient/young person’s representative by giving my views on upcoming research and projects etc.
I was invited to join the advisory board and I got involved because I thought it would be a good opportunity for me to influence future care through sharing my experience and to learn more about my condition. As an Advisory Board member, I have taken part in a number of events such as a lab opening and royal visit, giving me an insight into the wider work of the centre. In September last year, I gave a talk at the British Society for Paediatric & Adolescent Rheumatology (BSPAR) 2015 conference in Belfast.
I hope that my involvement, and the work that is constantly being done by other members to engage and involve patients with research, will help to educate people and encourage participation. I also hope to create greater awareness of the fantastic rheumatology centres across the UK and the conditions they cater for, and to improve the information that is available to patients. For me, this is great as it is easy to feel as though you can’t do anything to change the care you are getting or the amount of control you have over your condition.
WHAT DO PATIENTS THINK OF RESEARCH?
When initially coming to the centre as a patient I lacked knowledge on what research entailed and the ways I could be involved with it. To increase participation in research I believe we need to educate people on the benefits of taking part and provide evidence of positive effects on patients. Let them know what progress has been made and update them on results. To a certain extent, selfishly, patients want to know why research is relevant to them. How will it effect them? This will also show patients what advancements are being made towards finding a cure or developing treatments for their condition, improving the way in which they feel about their health and their future. Including patients enables researchers to structure their future actions on the views of patients, meaning that the outcomes are usually more successful as it appeals to their needs.
I have two sides to me, medical student and patient. One side, I go into university as a medical student and I learn about the different types of trials that can be done, and the sort of funding and approval that is needed for research and the barriers to researching different things. But then alternatively, when I’m sat in clinic as a patient. I want to know what is being done for me. What caused my JDM? How will this new drug affect me? What are the long term effects on being on methotrexate/steroids etc? Benefits?
From being on the Advisory board I have seen the amount of work that is put into deciding where research is needed and how funds are raised and designated to various areas within the centre. Treatments are constantly being improved, along with other aspects of basic science. Also before being on the board, I wasn’t aware of the great need for research into the psychosocial areas of healthcare such as patient attitudes to their care and patient involvement in research etc. The centre works on all aspects of holistic care and works to continually improve patient experience. As a patient, this encouraged me to get more involved in research as I saw how easy it was, whether I gave a small amount of blood or contributed my views on an upcoming project. I wont just be a guinea pig in a large drug trial. Greater education was the key to this change in view. Don’t presume that patients know what ‘research’ is or that they are just disinterested!!
HOW DOES RESEARCH INVOLVEMENT BENEFIT PATIENTS?
Something I didn’t really expect was the way in which being on the board would impact me. Since being a part of the advisory board, now at 20 years old, I feel more positive about my condition due to seeing the amount of hard work and dedication the team put into research and improving care for their patients. As teenagers and young adults we are always turning to our peers for advice and support on what’s normal and what level we should be at. Being diagnosed with a chronic illness at 17 threw me in the deepest pits of abnormal in my mind. Since being involved I have learnt so much more about my condition and met lots of other young people in the same position as me. I’m now reassured that these sort of things effect everyone differently, and its never good to compare your progress to others, particularly those that are healthy.
Being more proactive in the JDM community has made me think more deeply about what I want out of my care and what I think others might want. I then share this with the team to make improvements across the centre. I sit with experts in this area and they know most things about JDM, far more that I do, but as a patient, sometimes, I can provide an alternative viewpoint which may have not already been considered. If you’re not a patient yourself, you can’t take on the role of representing patients. However, it’s also important that you’re giving constructive advice. No good simply saying “We want a cure!!”. Yes, that is the target goal overall but it is more realistic to comment on how we can approach patients for research, manage pain or side effects. I think as a medical student, I understand the two sides and this helps me when giving my feedback.
HOW CAN WE GET PATIENTS MORE INVOLVED?
This research business is a two way street, without the work of healthcare professionals we would not be out there living our lives but then you need us as well. A well-moulded partnership between the two sides is the only way that we are going to receive optimal results from our research and ensure that both groups are happy. We need to recognise that patients have the experience and skills that complement those of researchers. We know what it feels like to suffer a particular disease and to undergo the treatments with the various side effects. We will have a good idea of which research questions are worth asking, and when a question should be framed differently. Instead of being directly asked about our research priorities, we should be asked about what problems we see or experience, and supported to translate these into research questions.
Traditionally, patients have been involved in research as “subjects,” or even “objects,” and I think this how some patients also regard their involvement in research. Once you’ve educated patients on research, making it more accessible to them is basically all that is needed. Rheumatology may be a collection of rare and unusual patients, but in my opinion, it is one of the most friendliest specialties because you focus so much on improving everyday quality life as a cure is not always available. The connection that you have with your patients is what will help us to improve patient participation in research and optimise the results, it’ll make the specialty stand out from the rest.
Keeping patients interested and updated on research can be difficult so it’s important to let them know what’s going on, this can be done by newsletters, emails, social media etc, even a noticeboard in your clinic. This way patients can see what is being done and what they are contributing towards. Invite patients to research open days to learn more about how it works or get them involved in conducting the research, maybe by interviewing other patients, helping to put a questionnaire together. Set up blogs or websites to spread the word and give patients the ability to express their views and concerns. Invite them to join advisory boards or patient panels. By giving patient’s more responsibility they can take something positive from their experiences. Creating this supportive network between patients will help them to encourage each other when they are going through difficult periods or congratulate each other when somebody achieves.
CONCLUSION
Overall, the message that I would like to convey from this is that increasing patient involvement in your research and making sure they are aware of their impact, not only improves the care you provide to patients, it also can give patients a sense of purpose and control when it comes to their own health.
Thank you for listening and thank you for the hard work that is put in by so many of you to improve care for people like me and hundreds of others. I am very grateful to those who invited me to talk and write this blog to share my experiences as someone who is healthy, fulfilling their goals and enjoying life.
Short animation exploring clinical research from the perspective of children.
This exercise develops knowledge of different types of research and related terminology. The task requires young people to match a phrase with its definition.
