Article publiced in the book of Lucien Engelen
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 has
changed in the Netherlands. The first homes were adapted so that people could
continue living at home, rather than in an institution. The first patient organizations
were 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 experienced
the 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 too
many 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 our
lives, 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
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