“Hello, hello. Anyone there?” (Image copied from: http://healthecommunications. wordpress.com /2012/02/02/patient-engagement -versus-physician-engagement-which-comes-first/)

One of my favorite films of all times is called “The Princess Bride”, a sort of “Errol-Flynn-goes-Monty-Python” experience and if you haven’t seen it, I strongly recommend you doing so. One of the film’s villains frequently says “Inconceivable!” and finally his twice-as-large and half-as-smart sidekick interjects: “You use that expression a lot. I don’t think it means what you think it means.”.

In my opinion, the same is true for the expression “patient engagement”, I don’t think it means what you think it means… Let me try to explain.

All over the world, healthcare organisations are desperately trying to engage patients to tell them what it is like to be a patient, to tell them how they (patients) want them (healthcare organisations) to work to best provide the services they (patients) need and want. Don’t get me wrong, this is a good thing! Patients’ experiences are of course extremely valuable to improve the healthcare systems. However, I see a few problems here:

•  the use of the word “patient” suggests that the opinions and experiences that the system is interested in only relates to our experiences in the context of healthcare. What people with diseases and health-related problems really want is health, not healthcare. If you ask a person to give their view on healthcare within the setting of healthcare, you will get their views on healthcare, nothing else.
• there is often a large knowledge gap between the person asking the questions and the person responding. Patients often do not have a very good understanding for the complexity of the healthcare system. This means that they will very likely not be able to put their experiences and opinions into the context from which they are asked.

These minor objections however fade in comparison to my main concern with how currently patient engagement is being operationalised. Think about it, all over the world, healthcare organisations are inviting patients to engage in the healthcare structure…. think again…. healthcare organisations are inviting patients to engage in the healthcare structure. We, the patients, are guests at healthcare’s table and, as guests, we are expected to adhere to the prevailing rules (explicit and implicit). Are we really an equal stakeholder? An equal stakeholder with mandates and responsibilities?

Is there really no other way of engaging patients????

Write your question in a comment to this post.

On another level, it can give me the chance to make this world just a little bit better. A few years ago I decided to make an effort to combine my experiences of being a patient with a chronic condition and my engineering knowledge in a more concrete and explicit way. To make a long story short, one thing lead to another and I am now in a position where I can hope to be able to influence the way patients are regarded in healthcare as well as in the rest of the world, albeit in a small way.

My new career in the healthcare area has taught me a lot of things. It has taught me that there is a very large number of fantastic people trying to make healthcare more participatory, letting the patients take more responsibility in their own selfcare. It has taught me that there are a lot of organisations working hard to establish a true partnership between healthcare and the patients. One example of such an organization is the Institute of Medicine, and the meeting they arranged last week titled Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement was a joy to follow on webcast.

But there is so much left to do. We can talk about strategy for change until we turn blue in the face, but to quote Cristin Lind (@durgastoolbox) from the very same meeting: “Culture eats strategy for lunch”.

So many organizations engage patients based more on tokenism than on a wish to take advantage of the true talent of patients.

Maybe it’s time for a new kind of tokenism? A token that you get from taking the patients’ journey?

Foto från @StefanJutterdal:s twitterström.

Jag hade glädjen och äran att medverka vid SKLs 7e Patientsäkerhetskonferens på Stockholmsmässan i tisdags. Det var väldigt trevligt att få stå på den runda scenen under moderator Katarina Hultlings skickliga ledning och ett privilegium att få tala efter professor Diana Delnoij från Tillburg University och sektionsledare Britt-Mari Banck och patient Thommy Edberg från dialyspaviljongen Länssjukhuset Ryhov. Diana Delnoij presenterade på ett kunnigt och engagerat sätt en översikt över dagens forskningsläge gällande nyttan med patientmedverkan. Britt-Mari Banck och Thommy Edberg beskrev den mycket påtagliga nyttan för såväl vården som enskilda patienter med den världsunika självdialys som bedrivs i Jönköping. Det var underbart att höra!

Bilderna från min presentation finns nedan.

I am a firm believer in the ideas of Quantified Self and incidentally currently have the fortune of participating in a study from Psykologifabriken aimed at encouraging everyday creativity. These two things lead to an idea during my walk to work this morning: I will try to quantify my freezing-of-gait and monitor the effects of different interventions on it.

Starting today, the plan is to register when my freezing-of-gait appears, using a scale 1-5 for severity. Let’s see what happens!

A friend pointed me in the direction of an excellent blog post by e-patient Dave, a patient advocate I truly respect and admire for his ceaseless efforts to make the world a better place for everyone who will ever find themselves in the situation of being a patient (basically everyone…). This post, with the long title: “Mobile Devices: Know the RISKS. Take the STEPS. PROTECT and SECURE Health Information”, discusses in a very good way some of the issues that our healthcare providers are faced with given the developments in health IT, referring to an US governmental website by the health IT branch of the department of Health & Human services.

I found the website very informative and wanted to find some information relating to the patients’ situation under these circumstances. Luckily, I didn’t have to go far, on the next tab, I found what I was looking for: lots of useful information on health IT from the perspective of patients and families. N.B. that the information on that website is completely applicable to the US only and that legislation can vary between countries. There is however plenty of information of a more general kind that I warmly recommend to anyone wanting to know a bit more about health IT, how it can help you and what you need to look out for.

After my diagnosis of generalized dystonia on the 6th of November 1989, I tried as best I could to not be different to anyone else, to not acknowledge the disease that the neurologist had told me that I had. This proved quite a challenge, since I moved slowly at times, and also had trouble walking more than a few hundred meters without starting to lean more and more forward, almost falling over (festinating gait). All the same, I was enjoying my studies in chemical engineering at the Royal Institute of Technology in Stockholm, making new friends and eventually moved in with my new boyfriend.

Time passed and I changed neurologists (I have noticed that, given a choice, people rarely stay with the neurologist that diagnosed them, I think it probably is part of a coping strategy). Around 1991 or -92, the new neuro gave me a medication that gave me some relief from the trouble my body presented me with. In time I graduated with a master in chemical engineering and I started working.

In the spring of 1999, my neurologist told me that he wanted my to try a new medication. It was called levodopa and was mostly used for Parkinson’s disease. He had read about a kind of dystonia that had a positive response to this medication, called dopa-responsive dystonia and he wanted to see if that was what I had.

I took my first dose of levodopa in April of 1999 and it was the beginning of a new life to me! For the first time for as long as I could remember, my body actually responded to what I asked of it! I could move almost effortless and the world was a brighter place. I felt strong, in control and for the first time in my life, having a child started to seem a possibility.

On the 30th of January 2003, our beautiful daughter Frida was born. One of her father’s colleagues said: “She looks just like her father, but she is still pretty”. I was just going to turn 32 and the focus of my life had changed. I was very happy.

In May of 2003, I went to see a different neurologist. I was hoping he could tell me about what kind of research was being done in the field of dopa-responsive dystonia. He  didn’t. Instead, he told me: “But you don’t have dopa-responsive dystonia, you have Parkinson’s disease”.

Parkinson’s disease… Here I was, 32 years old and he tells me that I have an “old person’s disease”… Perception is a strange thing. Hearing him telling me I had Parkinson’s disease changed my life. Having dopa-responsive dystonia was a burden, but the medication worked well and I had read that dopa-responsive dystonia didn’t necessarily progress, it could even go into remission. Parkinson’s disease, however, is a neurodegenerative incurable disease…

Nothing had really changed: my symptoms were exactly the same from before he told me that I have Parkinson’s disease. At the same time, everything had changed, my perception of my situation had changed. I saw nothing but suffering and despair in my future… I felt like inside a black hole and didn’t think I would ever smile again…

Luckily, having a baby that needs you is a good thing in such a situation. Her needing me made me look outside myself and brought me back into the world. In time I learnt that my type of Parkinson’s disease was of a relatively mild form with a reasonably slow progression. I was going to be able to enjoy many good years more.

On the 9th of June 2007, we celebrated our love and were married on the warmest day of that summer. Life is wonderful!

I saw a neurologist for the first time in my life on the 9th of June 1987. I was 16 years old and had problems with my coordination, balance and fine movements. The neurologist examined me and told me that there was nothing wrong with me, what I was experiencing was purely psychosomatic.

I left the clinic feeling dazed and mistrusted. Mistrusted because I knew that he was wrong, I knew that what I was experiencing was not psychosomatic. I knew that there was something wrong with the way my body didn’t respond the way I expected it to.

My next visit with this neurologist was on the 6th of November 1989. I was almost 19 years old and on my way to start my life. I was studying my first year of a master in chemical engineering and found working in the chemistry lab a challenge. Try titrating with dysfunctional fingers and wrists that won’t move… Taking notes in class and also writing at exams caused me a lot of stress. On the good side, I made lots of friends and had also met the man who was to become my husband, though neither he nor I knew it at the time.

This time the neurologist told me that I had a neurological disorder. He told me that I had something called generalized dystonia. The strange thing is that even though I knew that something wasn’t right with the way my body didn’t do what I asked it to, I was shocked at hearing that I had a disease. To hear the doctor, the expert telling me that there was a name to what I was experiencing made me feel numb.

Perception is a strange thing.

To be continued…

I am a doctoral student at a medical university, but I am also a patient. What does the concept “patient” really mean? When is a person a “patient” and when is he/she something else?

The word “patient” is derived from the Latin word “patiens” and the original meaning is “one who suffers”. In the current version, the word also comprises the context in which the “patient” finds him/herself, meaning that a “patient” is someone who seeks help from a care provider or a helper for some kind of health issue. If the person with the health issue does not have a helper, he/she is not a “patient” but “only” ill.

This definition got me thinking… So a person with an illness is really only a “patient” in the context of healthcare… Which brings me to the strange picture in the beginning of this post. The picture consists of 8766 circles, each representing one hour and together they make up the number of hours in a year.

I visit my neurologist once or twice a year, about 30 minutes each time in the care for my Parkinson’s. That is one hour each year in healthcare for my chronic disease. If you look very closely at the picture, you might see that one of the circles is of another colour than the rest. That orange circle symbolises the time I spend in healthcare every year for my neurological disease. And the rest of the circles, all 8765 of them, each symbolises one hour I spend practicing selfcare.

In my mind the relationship 1:8765 raises two questions:

• When will we see even a fraction of the resources being spent on improving the one hour of healthcare being invested in supporting selfcare in chronic diseases?
• What to call ourselves when we are spending time in selfcare? 

All suggestions and answers are welcome!

If you want to use the picture, please feel free to download it from this post.

Vården flyttar ut på nätet – Metro