Article publiced in the book of Lucien Engelen 

Augmented Health

Patients as equal partners

Anne-Miek Vroom MSc.: medical sociologist, patient & member of the Dutch quality council, and founder & CEO of IKONE

At IKONE, we developed a patients included maturity model. This five phases model defines the evolution of patient participation in healthcare care. The first phase is defined as ‘patient passive’. In the early seventies, people with rheumatoid arthritis mostly lived in institutions. They became handicapped by their condition, were bound by their wheelchair and suffered tremendously. At that time, people were relieved of their duties. They no longer had to work and had to comply with the care that was offered. 

Gradually, the way we dealt with patients and disease management haschanged in the Netherlands. The first homes were adapted so that people could continue living at home, rather than in an institution. The first patient organizationswere established, gradually gaining more influence and creating a voice. We call this the phase of 'patient conscious'.

I was born at that stage, with a rare condition: Osteogenesis Imperfecta, the so-called brittle bone disease. Although the medical specialist was an authority for my parents and me and we listened attentively to his advice, we also experiencedthe first forms of collaboration. If I suffered from a bone fracture due to a fall, we were allowed to skip the GP and enter the emergency room of the hospital via the back door. In the consulting room, however, we were docile: we did not ask toomany questions and walked out with a civilized 'thank you doctor'.

In the last ten years, patients are put in a central position. A new phase. I write 'put' emphatically, because I still experience this as an external movement. The patient does not do this himself but is centralized by others. There is more awareness for the importance of communication, aimed at improving the primary process. We also see the emergence of new medical opportunities during this period. Just think about biologicals. From the beginning of this century, people with rheumatism are offered this type of medication, which changes their quality of life profoundly. Patients have less pain, their limbs become considerably less deformed, and they increasingly participate in the midst of society.

However, there is also a downside to the 'patient central phase'. It is still mainly about illness, while being ill or being a patient is merely one of the roles. We also have roles as a father or mother, a partner or an employee. And that relational environment is also important in life and healthcare. For example, people with rheumatism still experience fatigue, but insurance physicians see a seemingly healthy body. With medical progress, we sometimes forget where we came from. Some patients no longer feel that there is space to be ill. Because of their grief, discomfort or pain, they take a fighting position. This often works counterproductively. That is also noticed by healthcare professionals, who feel that they are doing everything to put the patient at the center of their efforts.

This raises the question: does collaboration in health care require much more than joint decision-making? It is time that there is serious cooperation with experiential experts in all layers of organizations and in all phases of innovation. How do you do that? is a frequently heard question.

IKONE has started with this awareness, the realization that patient expertise is direly needed. Our organization facilitates and advises on the embedding of the next phase, that of ‘patient equal’. A phase in which the life path is leading. We live in a fantastic time. Technology and digitization are transforming the medical domain. If we want to ensure that these opportunities are successfully implemented in ourlives, we must reach out to each other, and transcending the silos.

Do not ask patients to give their opinion on an ad hoc basis. Patients must become a structural and equal partner in the healthcare sector. Avoid having to go back to the drawing board and apply different patient participation methods in all phases of innovation. Let patients within organizations be a strategic partner, stakeholder and decision maker. Work on prevention from the origins of actual illness and life experiences. And create the care together with all the patient's stakeholders: doctor's assistants, nurses, doctors, administrators, home care, general practitioners, family members, loved ones, you name it. 

More than sixty patient experts are currently working within our growing organization. They are trained internally to become equal discussion partners. Together with our consultants, they work with passion and for our shared mission: the inauguration of the phase in which the patient is in the lead. A phase in which we always take as a starting point: what brings you quality of life? Knowing that we can never completely prevent disease, we work on care that is intertwined in our daily lives. 

Full of attention and facilitated by endless technological possibilities. Ideally, this is the end of the habit that we call hospitalization. To achieve this, it is necessary to constantly learn and improve. With an ethical view, we draw lessons from history and we have to be careful with our individual lives. We cannot rebuild the healthcare sector. However, together we can ensure a transformation that stimulates health and well-being. That is, for me, 'the end of the beginning'. Open your doors and have courage.