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!

“The Patient Perspective” from The Journal of Parkinson’s Disease 20th March 2014

This is an article written by Jon Palfreman for The Journal of Parkinson’s disease, published on 20th March 2014. It is published here with the permission of the author. The original article can be found at: http://www.journalofparkinsonsdisease.com/JPD/The_Patient_Perspective.html.

Sara i Ivar Lo parkenIn October 1984, a thirteen-year-old girl called Sara sat in a small village hall in northern Sweden enjoying a folk music concert. “Everyone was clapping their hands and stomping their feet,” Sara recalls, “and I wanted to do the same. I could clap my hands, but when I tried stomping my feet, I discovered I couldn’t. It was as if the signals couldn’t go from my brain to my feet.” This is Sara’s earliest memory indicating that something was wrong.

In the years ahead, Sara’s mother, too, noticed her teenage daughter moving differently from her peers. Sara, she observed, struggled when riding a bike, buttoning a sweater, or tying shoelaces and also dragged one of her feet when she walked. The school physician sent Sara to a neurologist, who after initially dismissing her symptoms as psychosomatic settled on a diagnosis of “generalized dystonia,” a lifelong affliction where muscles contract involuntarily.

Sara lived with this diagnostic label for the next 16 years. She studied chemical engineering and went on to work as an environmental consultant specializing in environmental risk analysis. Then in 2000, Sara’s neurologist — on learning that there was a clinical subtype of dystonia that responds to levodopa — suggested she start taking that drug. The impact was astonishing. Within days, her muscles relaxed and she could move much more fluidly. Says Sara, “the levodopa had a tremendous effect. Basically I had a new life, it was amazing.”

Sara felt so well — essentially “cured” of her dystonia — that she and her husband decided to start a family, and in 2003 they had a daughter, Frida. Then something unexpected happened. Sara, now 32, went to see yet another neurologist who, rather than accepting her medical history, examined her anew. His verdict was shocking. He told Sara, “you don’t have dystonia, you have Parkinson’s disease.” 

Sara’s life was shattered. “I fell down into a black hole.” After thinking she had been effectively cured, Sara — now caring for a baby just a few months old — had learned she had an incurable neurodegenerative disease. Sara has her own version of the stages of grief that individuals pass through when coming to terms with an incurable illness: her five include shock (at hearing the news); sorrow, (that’s mourning the future you won’t now have); searching (for information); sharing (that’s supporting your patient community), and finally shaping (making your own future again). The first time Sara made this journey from “patient with generalized dystonia” back to “person” it took her, she says, about 16 years. Now she had to go through the transformation again for Parkinson’s disease.

This time it was much quicker. For two reasons. Firstly, she’d done it before. Secondly, the world had changed. “In 2003,” she says, “there was lots of new technology not around in 1987 — there was the Internet, there was Google, there was Facebook. Information was everywhere and it was very easy to get yourself educated and connect yourself with other interested parties.” Sara has rebounded from the shock of her Parkinson’s diagnosis; she’s become a thought leader among parkies in a new age of social media. Sara Riggare not only went back to school, to Stockholm’s Karolinska Institute, to work on her masters and doctorate in health informatics, but also became an entrepreneur.

Riggare passionately believes that patients need to be much more involved in their treatment; that they should take ownership of their disease. The clinical status quo, she argues, is unacceptable, especially for chronic diseases like Parkinson’s. Like most people with Parkinson’s, Sara sees her neurologist every six months for a 30-minute session, and thus spends about one hour in total per year being observed. That leaves, she says, 8,756 hours per year of self care; time when she and others with Parkinson’s experience symptoms, but when nobody’s paying attention.

Sara realized that the same technologies that enabled Google and Facebook offered patients some transformative possibilities for better monitoring their health. She set out to adapt inexpensive consumer products like Fitbit and Jawbone — which use microscopic gyroscopes, accelerometers, and magnetometers to track fitness — so that people with Parkinson’s disease could better understand and control their condition. And she used herself for a pilot study.

Sara has no tremor but suffers from rigidity, bradykinesia, posture, and gait problems. She takes multiple drugs (MAO inhibitors, COMT inhibitors, dopamine agonists, and levodopa/carbidopa) in multiple combinations, multiple times a day. “Everything I do comes down to my medications, so I want to know how to quantify their effect, so I can figure out when to take them.” So she developed one Phone App to remind her to take and to record when she took medications and another App to measure the number of finger taps she could perform in 30 seconds. This simple tapping test gives a rough composite measure of rigidity and bradykinesia. Then she plotted the data. “I found that I actually had a pattern that repeated itself day after day.” She discovered she had a dip — a slow time — around lunch, when her tapping rate went down, and she wondered if by tweaking the medication schedule it could be fixed. “So I moved my dose from 11:30 AM to 11 AM and added a dose of COMT inhibitor, and that small change of half an hour made a huge effect on how my body reacted.”

Working with a business partner, Riggare is developing a smart phone application that other Parkinson’s patients can use to learn more about the specific patterns of their disease. Of course Sara isn’t the first to think of this. There are a number of expensive proprietary systems under development including the European SENSE- PARK project, the Cleveland-based Great Lakes NeurotechnologiesAPDM in Portland, Oregon, and  Global Kinetics in Melbourne, Australia. These companies are working on various combinations of advanced wearable sensors (worn on sites like the wrist, waist, and ankle), which track multiple domains — bradykinesia, tremor, walking, gait, balance, cognition and more. They are hard at work fashioning algorithms to extract meaningful metrics from the data. Most of these technologies are designed to be used in the clinic, under the control of a neurologist. And the companies’ business models are based on anticipated revenues from traditional Parkinson’s care and FDA regulated clinical trials.

Sara sees her goal as different. “My mission is to give individual patients the tools to improve their own healthcare experience. I need to show that my research can change things for me and for the world, and that it can make an immediate benefit, not in 10 or 20 years.” Interestingly, such ideas of a more personalized, patient-driven healthcare system find support outside of mainstream medicine. A number of powerful constituencies get very excited by the concept of wearable sensors: from Silicon Valley entrepreneurs making smart devices for the health and fitness market to proponents of the “quantified self” movement (a community where individuals seek “self knowledge through self tracking”), to scientists interested in amassing and analyzing “big data”.

Inside the biomedical research community, by contrast, such ideas get a cooler reaction. In the traditional medical model trained researchers do research, qualified clinicians practice medicine, and patients participate in clinical trials — they don’t study and manage their own healthcare.

But clinicians and researchers might be wise to take notice. History shows that “disruptive” change tends to come from the outside. Just as the music industry didn’t invent Spotify, and the phone company didn’t invent Skype, so it’s unlikely that clinicians and biomedical researchers will be the ones to tear down their existing biomedical infrastructure and replace it with something different. Of course, those disruptive outsiders, whoever they are, can expect to face resistance. As the personalized genetics company 23 & me discovered, there are lines that entrepreneurs cannot yet cross without attracting FDA censure.

Sara realizes that she’s not allowed to practice medicine. “For now we speak of it as being a support for your physician.” On the other hand, she insists that the eventual goal is to give patients the power to “take their health in their own hands…the patient will always be the owner of their health data, it is up to them to share it or not share it as they wish.”

Nya Karolinska Sjukhuset: var är patienterna????

Bild från http://nkskonferensen.se

Bild från http://nkskonferensen.se

Det här med patientmedverkan är inte lätt, det vet jag. Jag har skrivit flera bloggar tidigare på det temat, t ex här, här och här. Jag är väl medveten om att det inte är lätt, det är ju därför ingen har lyckats ännu. Det var därför glädjande att se att Nya Karolinska Sjukhuset (NKS) ordnar en tvådagars konferens på temat “Att tänka och bygga nytt för framtidens patient”.

Nya Karolinska Sjukhuset är enligt http://nkskonferensen.se/om-nks-projektet/ “en av de största satsningarna någonsin på vården i Stockholms län”. Jag har i en tidigare blogg påpekat att hela detta jätteprojekt (12 våningsplan, sammanlagt 330 000 kvm som tar 7 år att bygga) där man säger sig ha ledordet “patienten alltid först” inte har några patienter engagerade någonstans i projektet.

Nu ordnar man konferens den 24-25 april i KIs nya fina aula för att informera bland annat de som arbetar med utveckling av vård, utbildning och forskning. På http://nkskonferensen.se/om-konferensen/ kan man bland annat läsa:

 

“Konferensprogrammet genomsyras av patienten i centrum vid planering och genomförande av såväl byggnation som vård. Likaså av hållbarhet – Nya Karolinska Solna ska bli ett av världens mest hållbara sjukhus. Konferensen kommer också att ge många exempel på innovation och nytänkande. Dessutom lyfter konferensen fram möjligheter och utmaningar med samarbete kring stora projekt så som Nya Karolinska Solna.”

 

Det låter ju fantastiskt bra och verkligen angeläget. Jag tittade igenom programmet för konferensen och talarlistan. Men… Hur i hela friden tänkte dom????? Inte en enda patient på talarlistan…..

Hur kan man prata om “patienten i centrum” utan patienter???