By: Susanne Karlfeldt
Guest blog at King's College London Musculoskeletal Expert Patient Blog (link)
My name is Susanne Karlfeldt and I am a Research Coordinator at the Karolinska Institute (KI) and the Academic Specialist Center (ASC) in Stockholm, Sweden. My main responsibility at both sites is to facilitate and implement patient involvement in our organisations; at KI on an international level and at ASC on a local and regional level. Below are short descriptions about the two different assignments:
KI – At KI I act as a Patient Engagement Expert in an international EU-funded research project called RTCure – Rheuma Tolerance for Cure (rtcure.com). As such, I am the main contact for our nine Patient Research Partners (PRPs) and therefore responsible to ensure that the scientists/researchers always include the patient perspectives in all the sub-projects, meetings and discussions. My role also includes a link between the PRPs, the researchers and the administration of the project. In this context important questions about financial compensation/reimbursements, agreements, travel policies etc are discussed. In addition, I am also the main contact for questions from the PRPs to the funding agency IMI. (IMI is a joint venture between EU and EFPIA (European Federation of Pharmaceutical Industries and Associations) who provide funding for international research projects).
This position has provided me with new insights about the difficulties with changing the landscape of patient – doctor-researcher relations. Society has a longstanding tradition of a hierarchy that tend to out doctors and researchers on a higher level than the patients. Fortunately, more and more stakeholders such as caregivers, researchers and policymakers realise that this is an old-fashioned way of conducting care and research and want to involve the patient in a totally different way. Changing old traditions is challenging, but necessary so I find my work very important. I have also been in situations where PPIE work has triggered very interesting discussions about how best to truly involve patients in research projects. Many times, I have observed tensions between what the research consortium plans to do on the one hand, and what the financial and legal restrictions allow the research team to pursue, on the other hand.
ASC – at the ASC, I am responsible for our Patient Council; a group of representatives from 11 different patient organisations within the current fields of long-term diseases (Rheumatoid Arthritis, diabetes type I, Multiple Sclerosis and Parkinson’s Disease). One of my main responsibility is to make sure that we have patient representatives in all our process groups, the management teams of the clinic, in student education and much more. In the different process groups, we discuss on a very practical and operational level different parts of our working routines on how to improve patient centred care and to optimize the outcome of care and make better utilise our resources.
With my patient involvement and public engagement (PPIE) background, I wanted to learn more about this type of work at King’s, since I had heard a number of activities and outcomes from the group through EULAR and the RTCure PRPs who are also active Patient Experts at King’s. Heidi Lempp invited me 2018 to visit the Department of Inflammation Biology. During two intense days in May 2019, I had the opportunity to learn more about PPIE in a different context (country, academic and clinic settings) and also to share my experiences from Stockholm.
Heidi had put together a fantastic programme with some members of the departmental Expert Patient Group and I managed to meet up with a range of academic staff in different positions, e.g. PhD student, clinical nursing lead from King’s College Hospital, attending a Rheumatology Outpatient Clinic at Guy’s Hospital , medical statistician, MRC Fellow and the Head of the Department, who in different ways work with patients and patient research partners during their clinical and academic work. I met with several of the departmental Expert Patients (Carol, Tom, Ruth) who provided great insights and input on how the collaboration can be effectively embedded with academic and outpatient clinic staff, and yes it has taken a long time. All the discussions e.g. how to recruit more Black and Asian minority ethnic patients into clinical trials and how focus groups can provide useful data were very inspiring and I was very impressed by all the broad range of PPIE activities (local to international) that are going in the Department. We shared a lot of great experience and successful activities (e.g. patients being part of an interviewing panel for a new researcher) and stories (e.g. how the Patient Education Evenings provides an ideal opportunity to meet with fellow patients and carers), but we also talked about the frustrations (e.g. what does the name ‘Expert Patient’ mean to colleagues and other patients, how do we change the attitude towards involving patients in care and research within the different professions) and the constant need to justify patient involvement and facing institutional and administrative barriers/regulations that obstruct working closely with patients/carers in research as well as in clinical care. However, interestingly, under and post-graduate medical education (and examinations) are more inclusive.
What I take with me from these inspiring days is that trying to include patients and their perspectives in all parts of the organisations is a very important and rewarding task in my current dual position. There are a lot of great examples that I heard about that can I can learn from (e.g. conducting focus groups, patients being part of an interviewing panel for a new researcher), but there is still so much more to improve to develop closer collaboration with clinicians and researchers. But after these great days in the Department with the PPIE team, I feel very confident that as a society we are at the cusp that will become very relevant and rewarding in the future, in partnership with patients and their carers who live with long-term conditions.
