Paola Kruger talks about how she became a patient expert and helps provide support to other patients with her condition
The journey into patient advocacy usually starts with a diagnosis; in my case of multiple sclerosis. After this, each of us reacts in different ways. For me, the curiosity and need to know more about the new world that suddenly opened in front of me took me on a path of education and training, starting with undergoing the EUPATI course (European Patient’s Academy on Therapeutic Intervention) which made me realize the importance of patient involvement in the research and development of medicines. But along with pursuing my interest in research I have had the opportunity to work in and support the Multiple Sclerosis Centre of The San Camillo Hospital in Rome.
This has given me the opportunity to work side by side with doctors and nurses in my role as a Patient Expert attached to the unit. It has taken time and it has sometimes been a difficult role to take because although the medical staff acknowledged the benefits of having a Patient Expert as part of the team, establishing the boundaries of this innovative position and building trust has not been easy.
Firstly, let me make it clear that it’s not a patient expert’s job to be a substitute health professional: we each have our own area of expertise and they complement each other. A patient expert in the clinical centre I work in has two main roles: to support patients to adhere to their treatment and give them reliable information on living as well as they can with their disease. Providing face-to-face interaction with someone living with the same condition is something that most patients value highly. The added value (in my case) of having a solid scientific background is that I can explain the details and reassure patients that the medicine they are taking has gone through rigorous testing and care has been taken to reduce side effects to a minimum. Patients often need to be reassured about the small details, because everything is new for them and the doctors’ busy schedule doesn’t always allow them to adjust to requests for more information, or longer time to understand and take up new routines.
I am the first patient expert officially recognised by the director general of my hospital, which makes it particularly hard to establish a set path. Everything is new and we have to negotiate different views and habits. However, our aim is to disseminate this concept among the hospital’s chronic disease units so they might follow our example. There is much value in having trained patients and healthcare professionals collaborating together. So far no other patient expert has been officially involved in the hospital’s activities as a single expert with specific training, just patient organisations providing general information and support in a more traditional role.
Working hours vary from week to week and it is all voluntary work, but it is a great learning experience and, above all, I feel that I am opening up new opportunities for patients and I feel very motivated. I have always believed that if you want to change something you have to be the first one to give the good example.
I don’t support patients in shared decision making as it is too close to the doctors’ job and I prefer to avoid any possible hint of interference, however, what I do is to try to explain to patients how important it is to take responsibility for your own care and not leave everything in the doctor’s hands. I can also reassure them if they are scared about coping with side effects of treatment, but only if they ask me. I follow the principle that it must be a patient’s choice to want to speak to me rather than proactively looking for them and offering help. Patients need to adjust in their own time. For doctors, and nurses, it means less time spent on answering questions that are not strictly medical, but more about patients adapting to a new way of life.
Patient experts in the clinical centre can also support research activities: for example by being available on recruiting days to give patients the opportunity to discuss their fears about taking part in a clinical trial (it is easier to open up with a fellow patient), help them to understand the intricacies and importance of informed consent, explain in patient friendly terms the different stages of the trial, and the requirements put on trial participants, such as the commitment to long term follow-up. Most patients are not told about the statistical value of their individual commitment to a trial and many drop out thinking ( incorrectly) that someone else can replace them.
What I really like about my role is to see how my help can support other patients and make coping with illness more bearable. To hear them say how my support has been crucial in some very negative moments makes all my efforts worthwhile. Sometimes the doctor I work with warns me about patients becoming very demanding, but I tell him that I only accompany them for part of their journey, then they adjust, get some confidence back, and carry on without my help.
One of the difficulties I face with doctors is trying to make them understand that knowing everything about a disease doesn’t mean they know what it is like to live with it. Their role is vital, but living with the disease is not part of their expertise, so they are not best placed to advise patients on this issue, that’s why having a patient expert in the team helps and results in a better service to patients.
I am not specifically trained to work in a medical team, my involvement stepped up gradually after I started to support the clinical centre with EU projects. Working together has helped me build trust and understand different points of views. It has been a long, but steady journey. What has made it hard for me at times is the fact that doctors end up seeing you like another healthcare professional and it is difficult to explain that we use a different language and have different habits and expectations. We need to develop a common language that makes everybody feel comfortable, and create a new team spirit where all the skills of all members of the team are valued.
It’s not common to have a patient expert in a clinical centre, but I hope it will become more so in the future. In Italy, where there is a growing lack of specialists, having a patient expert on the team can be a real help, as well as providing a strong element of personal growth to all.
Paola Kruger has been involved in patient advocacy since her diagnosis with a chronic disease in 2010 and has been working with the MS Centre of a large hospital in Rome developing patient-centric healthcare models. She graduated from the IMI-funded project EUPATI project in 2016. In April 2019 she was appointed patient expert of the MS Centre by the Director General. She is a listed EMA Expert and speaks at numerous national and international events. She is a member of the ISPOR Patient Roundtable and represents patients on several boards and Scientific Committees.
Competing interests: PK recieves travel expenses and speaking fees as an unpaid member of a guidelines panel.