(This blog post is also available in Swedish =>> here)

Most people living with Parkinson’s disease take a lot of pills, multiple times a day. After having Parkinson’s for a while, it’s not uncommon to be prescribed 3-4 different types of medications to be taken in various combinations 4-6 times each day. One of my medications is an extended-release type, which means that the pill slowly dissolves in the body, and therefore, at least in theory, it’s sufficient to take it only once a day. When I started taking that medication, I did exactly that, took it once every day, in the morning. After the usual “adjustment problems” such as a bit of nausea and similar issues for a few weeks, I felt confident that the addition of this medication did indeed make it a bit easier for me to move around.

After some time however, I noticed that the positive effect was noticeable in the morning but the pill didn’t give me as much of an effect later in the afternoon. During my next neurologist visit, I mentioned this to him. I knew that the same medication was available also in other dosage strengths so I asked him if maybe he could prescribe it to me in a lower strength so that I could spread out my intakes of the extended-release formulation over the day. In this way, I could take lower doses at several different times instead of taking only one higher dose tablet in the morning. He considered this for a few seconds and said: “According to the information from the pharmaceutical company, it really should be enough to take this medication only once a day, and it does seems inconvenient to take it at multiple times. But if you really want to, you can try.” I left the clinic with a new prescription and was curious to see how this new dosing would work out.

It should come as no surprise that I strongly believe that the improvement of healthcare should be done together with patients, and I recently came across a scientific article that made me see patient involvement in a completely new light: “Beyond experiential knowledge: a classification of patient knowledge” written by Vincent Dumez and Audrey L’Espérance. They identify six types of patient knowledge from three main sources of patient learning, see the Figure. You can read a separate post about that article here, and most important is that Dumez and L’Espérance made me aware of the concept of patients’ experiential knowledge. I also went through that article’s reference list (a good way to find other relevant scientific articles in a particular field) and found a very interesting article published back in 1976: “Experiential Knowledge: A New Concept for the Analysis of Self-Help Groups” written by Thomasina Borkman. There, experiential knowledge is described as “first-hand knowledge,” meaning knowledge obtained from personal experience with a phenomenon, as opposed to knowledge that comes from reasoning, observation, or reflection based on information provided by someone else. I have written a separate post also for this article (link here).

So what? Why is this important?

What does this mean then? In what way do these two scientific articles relate to patient involvement? This is my take: Through their education and professional work, healthcare professionals have acquired theoretical knowledge. They have also gained experiential knowledge through their professional practice. Of course, both of these aspects are very important when you want to improve and further develop healthcare. And if you live 24/7 with illness, disabilities, and the need for help and support from healthcare and society, AKA patients, you gain experiential knowledge. That kind of knowledge cannot be gained theoretically. You cannot get experiential knowledge from reading a textbook or a scientific article, it can only be acquired through living it.

This means that without also having direct access to patients’ experiential knowledge, healthcare professionals do not have the full picture and therefore cannot solve the problem at hand: to optimize individual health, in the best way.

Finally

You might wonder what happened when I started taking the extended-release medication several times a day instead of just once every day. Well, as usual when making medication changes, there were some initial adjustment issues when I went from a higher dose once a day to several lower doses. After that, it became very clear to me that this way of using the medication gave me a noticeably more consistent effect. I shared this with my neurologist, and later I heard from other people with Parkinson’s who also go to him that he started prescribing this extended-release tablet in the same way to other patients as well.

In conclusion: involving patients in improving and further developing healthcare is important because it ensures that healthcare is based on the actual priorities that patients have, rather than the priorities that healthcare professionals think that patients have.