“Liberté, égalité, santé!”

libertyLife in 18th century France was probably far from easy, although less difficult for some. The aristocracy were living relatively comfortable lives, where the very small minority were enjoying privileges that the large masses could only dream of. In fact, they couldn’t even dream there was such privileges. And we all remember the allegedly immortal words of the well-meaning but clueless Marie Antoinette: “But if the people don’t have bread, why don’t they eat cakes?”.

I would guess that the aristocracy didn’t really understand what the fuss was all about: “Why are these people upset? We have always taken care of them. We know what is best for them. They don’t need to worry their heads with the problems of the world, they are not even interested anyway…”. And we know what happened: the aristocracy didn’t  have to worry about haircuts ever again…

That attitude feels strangely familiar… And sure, with more rights comes more responsibilities. The right to vote is still not universal, and in Sweden, women didn’t have the same rights to vote as men until 1919. I don’t know about you, but in my opinion, my health is more important to me than who is the prime minister in Sweden (sure, the two are not independent but still).

People often tell me: “But Sara, you have to remember that not all patients are as engaged as you, you are an outlier…” My response is always: “I know that I am an engaged, knowledgable autonomous patient now, but 7 years ago I wasn’t, I was just an ordinary patient.”

The French Revolution, The Suffragett Movement and the Anti-apartheid Movement were all started by outliers. The masses were probably not very interested in what they were shouting about, they just wanted to do their best of a difficult situation… at first…

In my opinion, large parts of healthcare’s logic is based on the assumption that the doctor always knows best. And we patients have accepted that assumption for centuries, but times are changing.

We want to take more responsibility when it comes to our health!

The world cannot afford letting patients’ engagement and knowledge be wasted any longer!

Healthcare or health?

ThoreauA google search for “What is health?” just resulted in approximately 23 200 000 hits and I think that the number of different answers to the question is far greater still. The quote to the left is one of my favourite phrases about health and it is by the American 19th century author, poet, philosopher and much more, Henry David Thoreau. His words really resonates with me, as a person living with a difficult chronic progressive disease, health is not something I take for granted . But, and it is a big but, I also know that I have everything to gain from being an active participant rather than a passive bystander in the “battle” of my health.

In Parkinson’s, our neurologists assess our health using an almost infinite number of different scales; generic scales like EQ-5D, SF-36, EuroQoL or specific like UPDRS, PDQ-39 and many many more. To my mind those scales have very little to do with my own understanding of health. They are probably useful within healthcare, when you want to compare treatment results across clinics or make health economic evaluations. But do they REALLY measure health?

My personal definition of health is to not allow my condition to limit my life while at the same time not take unnecessary risks.

Given that my most troublesome symptom of Parkinson’s is freezing-of-gait, a strange phenomenon causing my feet to literally seem like they are stuck to the ground (see film clip below), especially in stressful situations, like for example crossing a busy street, you can see where the potential risks would come in.

Of course my definition is pretty much impossible to quantify in an objective manner but nevertheless, this is the way I want to live my life. And healthcare is aware of the risks associated with freezing-of-gait. In fact, freezing-of-gait is seen as a serious symptom, due to the obvious risk of falling and therefore is given a lot of attention from our neurologists. And they have treatments to offer for “advanced Parkinson’s disease”, which this symptom can be one of the signs of. My neurologist has told me that research has shown that with my combination of symptoms, I am likely to be a candidate for deep brain stimulation (DBS), a surgical procedure where electrodes are placed deep into the brain and connected to a kind of “brain pacemaker” placed under your collar bone. Don’t get me wrong, I have plenty of friends who have had this procedure with very good results and I am very happy that advanced treatments are available. But I am determined to make sure I have tried everything else in my powers before I let someone poke my brain while I’m awake (yes, the operation is performed with the patient awake to ensure that the desired effect is achieved  from the electrodes…).

In summary, healthcare’s solution to my main problem is something I want to stay away from for as long as possible. And if I wasn’t such a difficult patient (I sometimes call myself a “patient extremist”), I might have gone for the operation. Instead I went to Portugal for a week of intensive neurorehabilitation (see more here and here) and came back with new insights and belief in my own abilities. Portugal gave me a good start and I know I need to keep working on it. I also know that I may still need the operation at some stage but am now convinced that it will be some time yet.

In short: healthcare knows a lot about medicine, but to me health is a bigger concept than medicine and healthcare doesn’t always have the right answers to my questions.

We need a “Copernican Revolution” in healthcare!

Motion of Sun, Earth, and Mars according to heliocentrism (left) and to geocentrism (right), before the Copernican-Galilean-Newtonian revolution. Note the retrograde motion of Mars on the right. Yellow dot, Sun; blue, Earth; red, Mars. (In order to get a smooth animation, it is assumed that the period of revolution of Mars is exactly 2 years, instead of the actual value, 1.88 years). The orbits are assumed to be circular, in the heliocentric case. (From: http://en.wikipedia.org/wiki/Copernican_Revolution)
Motion of Sun, Earth, and Mars according to heliocentrism (left) and to geocentrism (right), before the Copernican-Galilean-Newtonian revolution. Note the retrograde motion of Mars on the right. Yellow dot, Sun; blue, Earth; red, Mars.
(In order to get a smooth animation, it is assumed that the period of revolution of Mars is exactly 2 years, instead of the actual value, 1.88 years). The orbits are assumed to be circular, in the heliocentric case. (From: http://en.wikipedia.org/wiki/Copernican_Revolution)

I share my birthday with someone very famous, I would say that almost everybody in the world know his name. At least we all know his work or rather, the result of his work. Nicolaus Copernicus was born 498 years ahead of me, to the day, and of course his work fundamentally changed the way we view the world, literally. I think our similarities start and end with both being born on the 19th of February.

Copernicus was born as the fourth child to a Preussian merchant and his wife and he truly was a child of the Renaissance. He had a doctorate in Canon law and was also a physician, astronomer, classics scholar, translator, governor, diplomat and economist (Source: http://en.wikipedia.org/wiki/Nicolaus_Copernicus).

Around the time of 1532, Copernicus’ work had resulted in a manuscript titled De revolutionibus orbium coelestium (On the Revolutions of the Heavenly Spheres), where he challenged the ancient geocentric view of the universe.

The work of Copernicus was further developed by Danish nobleman and astronomer Tycho Brahe (known to have died as a result of refusing to violate etiquette by leaving a banquet to go pee), German scientist Johannes Kepler and Italian scientist Galilei Galileo. The book Philosophiæ Naturalis Principia Mathematica, Latin for “Mathematical Principles of Natural Philosophy“, often referred to as simply the Principia by English mathematician and sir Isaac Newton confirmed the hypothesis of Copernicus a “mere” 155 years after it was postulated.

You are probably wondering what this unwarranted history lesson has to do with healthcare? Well, in my view, healthcare is in dire need of a Copernican Revolution. We need to go from the current healthcare-centric paradigm of healthcare to the natural and, to me, obvious patient-centric paradigm. “But”, I hear you say, “surely healthcare is already and has always been putting the patient in the centre of attention”. Sure, but “the centre of attention” is not the same as being patient-centric. Let me give you an example:

A friend of mine spent some time in the hospital recently. He also has Parkinson’s and since he took ill rather suddenly, he didn’t have his medications with him to the hospital. If you know something about Parkinson’s, you know that our medications are what keeps us going, keeps us moving, and without it, we would not be able to function very well. My friend had notified the nurses at the ward about his problem and told them that he needed to have his medications as soon as possible. They told him that they would get him what he needed when the hospital pharmacy opened at 10 o’clock the next morning. The next morning came and my friend reminded the nurses of his need. He was told that they would get his medications in due time. My friend was becoming increasingly rigid and he tried to tell the nurses that he really needed his medications. At this point, he was probably recognised as “another one of those difficult patients who think they know our job better than we do” and all the while he was getting less and less able to move by the minute. When a nurse finally arrived with the medication he needed, she had to put them in his mouth as he was no longer able to do it himself. He told her to come back in half an hour and she wondered if he would really need more medication that soon. No, he said, I want you to see the effect these drugs have on me. She came back with a colleague 45 minutes later and the patient she had left not even able to raise his hand to his mouth, was now sitting up straight in a chair, cheerfully reading a newspaper. He saw her surprise and said “Can you see what the medications do for me? Do you understand now why I need my pills when I say I need them and not when it suits your schedule?”.

The transition from a healthcare-centric system to a patient-centric one will not be easy, no more than the transition to a heliocentric view of the world was.

But I sincerely hope that we won’t have to wait 155 years for it to be completed!

What is the currency in health?

The question of value is an intriguing one. What do we value? Are people judged based on their abilities: the man who were strongest were made (or made himself) the leader of the tribe? Or is a man’s value to a larger extent based on his possessions: the man with the largest number of belongings when he died was the winner? In the old days, when someone owned something that someone else wanted, they found ways to exchange items by trading an item with a certain value for one or more items representing a value that both parties could agree were equivalent to the item in question. One day, some clever man (or woman?) came up with the idea of money as a sort of “exchange rate” for “value” and that probably both simplified and complicated things. These days, in the modern society, we all know what things are worth, don’t we? We all know what we are prepared to pay for an item or a service, don’t we? We all know the value of things we find important, don’t we? ………. Or, do we? Do we really?

Thomas Carlyle once said: “He who has health, has hope; and he who has hope, has everything.” We all value health, and historically, health has been seen as created in healthcare. In healthcare, value and money has always been an issue. There are a gazillion different reimbursement systems in healthcare in operation around the globe, one less appreciated than the next, and the person who solves that Gordian knot will probably receive the Nobel prize in both medicine and economics (and possibly also the peace prize…).

However, patients do not want healthcare. We are not really interested in DRG-codes, ICD 10 codes and who gets paid for what.

Patients do not want healthcare, we want health!

However, healthcare can not operate on health, healthcare is driven by money, and the leading “currency” in healthcare is DRG codes, ICD-10 etc. So the question is:

What is the currency in health?

That is of course a very difficult question and I am by no standards an health economist, so please forgive my (probably far too obvious) ignorance. I will nevertheless go out on a limb and say that I think we have a new currency in this field.

I think that the currency in health is data.

We all talk about “data-driven-this” and “big-data-that” so it is apparent that there is great value in data. But who controls that value? Of course the person or organization who controls the data, also controls the value of it. And in healthcare, patients very rarely control their data. Maybe we need a new paradigm? Maybe healthcare needs to let go of the control of the data we as patients generate?

Maybe patients controlling their own data is one of the fundaments to authentic patient engagement?

Patient engagement?????

“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????

Tokenism or talent?

Being an engaged and knowledgeable patient has a lot of benefits. On a personal level, knowing as much as I possibly can about my condition, about symptoms, medications, side effects, treatments, research and more, gives me more control of the situation, increases my possibilities to keep the progression of the disease at bay or at least keep up with it.

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?

Perception part 2

Perception is a strange thing.

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!

Perception part 1

When a person is diagnosed with a serious disease, something happens. Maybe not instantly, but most often the words “You have X”, where “X” can range from diabetes over cancer to ALS, triggers a reaction leading to a reevaluation of your life as you knew it.

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…

Healthcare vs Selfcare

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.

My mission is NOT to improve healthcare…

My mission is not to improve healthcare… no, it’s not a typo… keep reading…

And now that I have your attention, I will start over:

My mission is not to improve healthcare, however if I succeed in my mission, healthcare will be improved in the process.

In my experience, a period of frustration and hardship is often followed by insight and new levels of clarity. And the reward for the difficult times is the feeling of satisfaction, equal in strength to the sum of the frustration and luckily twice as positive as the other is negative.

My reward is seeing clearly that my mission is not to improve healthcare, but rather to use my experiences, knowledge and skills to help my fellow patients of all walks of life by giving them tools to strengthen themselves, thereby giving the individual the ability to improve his or her own healthcare meetings.

The sweet feeling of insights… and with insights come responsibility.

I am up for it, who wants to join me?