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“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??? 

Var är patienterna???????

Fotot kopierat från: http://www.ifl.se/ledande-fragor/

Fotot kopierat från: http://www.ifl.se/ledande-fragor/

 

Nu på lördag, den 1/2 2014, anordnas ett seminarium i Stockholm om hur vården kan förbättras och vad som hänt sedan Maciej Zarembas artikelserie “Patientens pris” i DN och jag tycker att det är ett utmärkt initiativ.  Se program här: http://www.ifl.se/ledande-fragor/. Seminariets program är proppfullt av läkare, forskare, politiker och andra. Men….

Var är patienterna?

Gör om, gör rätt!

My take on patient participation

onlinesurveyIn september 2013 I wrote a blog in Swedish fuelled by my frustration over the current situation regarding patient participation. I gave it the title “Enough is enough” (although in Swedish obviously). The blog seemed to resonate with a lot of people so I followed up with a blog with my suggestion as to a few questions for stimulating discussions. Here they are in English:

Question number 1: Why?

Why does the organisation/project/company want to engage patients? What do they want to accomplish by engaging patients? What kind of value do they see that the patients can add? What are their expectations on the patients’ participation?

Question number 2: How?

How are patients being engaged? Are the patients given what they need to contribute in a reasonable way to what they have been engaged to do? What does the process look like to ensure that the patients are given the influence and mandate they need to be able to do a good job? How is the patients’ participation facilitated by compensating them for the time and money they spend to be able to participate?

Question number 3: When?

When in the process are patients being included? Are they asked their opinion only when the result is to be approved and are expected to simply agree (because if they don’t, they are considered difficult to work with and will not be invited next time)? Or are they invited to constructively contribute to an honest evaluation? Are they maybe even given the opportunity to actively participate in the implementation of the project prior to evaluation? Is anyone bold enough to invite patients to participate already in the design phase? Unfortunately, I don’t think there are a lot of examples yet where patients have been given a genuine invitation to contribute as early as the planning phase and all the way through the steps to evaluation. If you know of any, please comment below.

 

Coming up with these questions was in no way the work if me alone, it was a collaboration with among others: @Durgastoolbox @Doctor4Quality @hannek12 @Gripenfighter @ElenaNoMad.

In the discussion following the Swedish blog post, a few additional questions were suggested:

Question number 4: Where? (by @KennethJohnson_)

Where in the organisation are patients engaged? On all levels? Why/why not?

Kontrollfråga 5: (by @Durgastoolbox)

Are YOU prepared to change when you engage patients? #patientengagement = #profengagement

 

I want to emphasise that in my view, there are no right or wrong answers to these questions. If the organisation/project/company don’t see any true value in engaging patients, they shouldn’t. But I think that these questions could serve as a way of initiating an honest discussion on patient participation.

Please comment and add your view!

 

 

Goal setting in the time of neurodegeneration

FireworksThe end of another year is approaching – always a good time for reflections, evaluations and decisions… or…?

I have never made any New Year’s resolutions and I have only recently started setting goals for myself.

I remember a discussion I had with my younger brother on a summer’s night probably around 20 years ago. We were in the attic of our grandparents’ summer cottage in the Swedish country side having a chat about “life, the universe and everything” before going to sleep on our beds among the spare furniture that were stored up there. Both in our mid-twenties, we were faced with the scary wonders of adulthood, including decisions like: “What sort of job do I want?”, “Where do I want to live?”, “Do I want to start a family?” etc. I  think that both my brother and I had found our first jobs after university at that time and I remember my brother telling me about his goals in life, how he was planning to be married and have children within, I think he said 10 years time. When I told him that I had not made any such goals for myself, he was very surprised. I was also surprised, but for a completely different reason. My surprise came from realising that other people had different possibilities in the way they saw their lives. It had never occurred to me to set goals for myself, due to the fact that I already at that early age knew that my body wouldn’t always do what I asked of it. I simply didn’t see any point in setting goals when I wouldn’t know what I would be able to do even a month later, let alone a year.

I didn’t plan my life, life more or less happened to me. At times I would really struggle with walking, I would move really slow and fine movements, like buttoning buttons or tying my shoelaces, were a challenge. Somewhere around this time, the implications of the diagnosis of generalised dystonia that I was given in my late teens, started to hit me. I had just started taking medication, which gave me some relief from the tension in my muscles and gave me a slightly more even gait. However, I was in no way in a position to feel confident enough to make plans for the future…

In the year 2000, this all changed. My neurologist had read about a type of generalised dystonia that responded well to levodopa, a medication mainly used for Parkinson’s disease, and he suggested I try it. He gave me a schedule for slowly increasing the dose until I could notice an effect, and boy, was there an effect!!! I won’t bore you with the details, but in short, my life was fundamentally changed! For the first time since I could remember, I could actually move without feeling like I was walking in water up to my neck, my fingers were suddenly very agile and I was the happiest person alive!

The mobility the new medication gave me, led to new ideas and wishes in life, wishes I hadn’t known I had and in January 2003, we had a daughter, a beautiful baby girl. Born nearly three weeks early, she was very small but with a strong will and she is still, almost 11 years later, equally impatient and strong-willed. Our lives changed forever and we loved it!

Later that same year, I was told by another neurologist that I didn’t have generalised dystonia, I had Parkinson’s disease… Parkinson’s disease… It felt like I fell down into a black hole and I have my darling daughter and her father to thank for making me realise that I had so much more to gain from digging my way back up again than staying down there.

As you can imagine, being diagnosed with a neurodegenerative disease that is very much associated with older people at the age of 32 didn’t really promote goal setting activities… so it took me a few years until I felt confident enough, but here is the result of my first attempt at written goal setting:

Mål 2010-07-10

In translation it reads:

“Goal setting for the first time, 12 July 2010

Goal for the summer (before 19 August):

Learn to walk my tightrope properly

Get my priorities right

Longterm goal:

Never have to have a DBS

Be able to make a living out of my interest for Parkinson’s disease”

I actually think I have reached a few of them in some way, we’ll see what next year brings. Maybe this is the time for my first New Year’s resolutions?

Travels with Parky

This is an article I wrote for “On The Move”, the magazine of Parkinson’s Movement on my experiences when travelling to the World Parkinson Congress in Montreal earlier this year. In the magazine, the article had to be slightly edited to fit the space available, but this is the “uncut” version :) .

 

IMG_7690When preparing for traveling, like everyone with Parkinson, there are a few critical issues to consider:

1. How many sets of medication should I bring?
2. Will I have to change my medication timings due to traveling over multiple time zones?

When preparing for traveling to the World Parkinson Congress in Montreal, there was an additional consideration for me to take into account:

3. Do I pack an adorable cuddly raccoon in a red hoodie in my check-in luggage or in my carry-on?

Traveling to Montreal took me on an unusual route: From Stockholm to London for a few days, then on to San Francisco for a few days and from there to Montreal and WPC 2013. I was going to be “on the road” for 16 days, going over multiple time zones several times and attending 3 conferences.

So that gives the answer to question number 2; yes, I would have to change my medication regimen, several times.

After a lot of thinking, I decided on four complete sets of medication, to be on the safe side, and to pack one set in my suitcase, one set each in my two carry-ons and to give one set to my colleague. Question number 1 sorted.

The racoon is of course the loveable mascot of the WPC, Parky, created by initiative of one of my fellow WPC 2013 ambassadors, Canadian Bob Kuhn, to give the people coming to the congress a chance to support the WPC and at the same time have something to bring back to children and grandchildren. Parky proved to be an excellent travel companion. Not only did he help me pack my medications, he was also an excellent ice breaker and conversation starter, but more on that later. And of course, I couldn’t check him in! Question number 3: check!

Prickbilden

 

As you all probably know by now, I am an engineer by training and a few years ago, I decided to combine my engineering skills with my patient experiences and try to improve things for myself and others with chronic diseases. Pretty much exactly three years ago, in September 2010, I started studying at a master’s program in Health Informatics at Karolinska Institutet, a program combining technology with all aspects of healthcare. It was just what I was looking for! Just a month into the program, I went to Glasgow for the 2nd World Parkinson Congress, and came back with an even greater conviction that I could really make myself useful and contribute to the Parkinson community.

In March 2012, I was registered as a PhD student at the department for Learning, Informatics, Management and Ethics at the Karolinska, and my research is focussed around how we can use observations we make about our individual disease to learn and even improve our own health. In my opinion, we can influence the effect our treatments (pharmacological and other treatments) have on us, both for better and for worse. I am not entirely sure of the situation in other parts of the world, but in Sweden, we have a lack of neurologists, and we don’t have that many Parkinson nurses either. This means that I see my neurologist once or twice a year, about 30 minutes every time. In other words, I spend in total one hour in neurological healthcare every year. The rest of the year’s 8 765 hours, I spend in selfcare. During all those hours, I can observe my condition and learn about my individual variations and patterns and this gets easier and less burdensome if I have useful tools, for example different apps and other devices. So, I figure that the information that I can collect during all those hours of selfcare every year, can be of use when I see my neurologist, as a way of giving both him and myself an idea of how I’ve been doing since last time and in my research I am exploring collecting and presenting information that is both relevant and useful, using apps and devices like sensors and other things.

 

IMG_7495

IMG_7505 The methodology I am working on in my research, came in very handy when going on this multi-legged trip. I hadn’t travelled much across multiple time zones since starting medicating for Parkinson, so I was concerned about how to adjust my medication timings in the best way so that I would be able to get the most out of all the conferences as well as hopefully also have some energy left. I decided to try to make sure that I could start the next day on every new location with my morning dose on the ordinary time in local time. When travelling west, this meant adding a dose or two during the day of travelling and for travelling east, I took out one or two doses compared to my ordinary daily dose. I tried to keep to the usual intervals between doses to be able to function during the flights as well. The results were very good! I took notes during the travelling on when I took my meds and how I was feeling and I was very happy and a bit surprised that I was able to give my presentations at the conferences as planned and also have energy for some sightseeing.

IMG_7515IMG_7517IMG_7600IMG_7532IMG_7478

 

 

Travelling with Parky was, as I said earlier, an enjoyable experience; we had a milkshake together in downtown San Francisco in preparation for a presentation at a Quantified Self meetup (if you haven’t heard of the Quantified Self, google it, I think you’ll find it interesting) and saw the Golden Gate bridge together. He also kept me company in all the airports and made sure my ticket was safe. In Montreal, he helped me meet new friends and basically was the center of attention. But in London, he was a bit out of line… I left him in the apartment we had rented when we were at the Medicine 2.0 conference and when we came back, he had drunk our beer and even eaten our chocolate!

IMG_7590

IMG_7688

Safely back in Stockholm, we both are looking forward to going to Portland, Oregon in 2016 and meanwhile, Parky has also made some new friends.

Bruised knees and bruised ego…

IMG_7670

I have a new friend. She can be seen on the photo here and I picked her up in a shop the other day. A few days earlier I had no idea that I would feel the need to pick her up, but there you go, that’s life I guess.

On Monday I went to work as usual, went to a few meetings in the morning, more or less ‘business as usual’. For lunch, I thought I’d show my two colleagues the brand new auditorium and the lunch restaurant there, so we took a short walk and went into the building that looks like a giant glass bowl. Of course, if you give three engineers the choice of three different dishes for lunch, they will pick one each. We went looking for a table, sat down with salmon on a bed of fennel, a giant ball of mince of lamb with mash and a Swedish quiche on a bed of greens, and no, the woman in the party (me) did not have the quiche…

Having finished both the food and the mandatory Swedish ‘fika’ (coffee or tea plus something sweet, like a cookie or cake or similar), we took our trays and made our way through the spacious restaurant towards the place for dirty dishes and I found myself thinking: “hmmmm, if I were to see someone I recognise sitting at those tables, I would probably find myself freezing…”. For those of you readers lucky enough to not understand the meaning of that sentence, here is a brief video from youtube (for the extra interested, look here). There is a lot to be said about this mysterious speciality of a fascinating disease, but that’s for another day, back to the restaurant…

You will probably find this just as hard to believe as my brain did, but exactly as that thought (“hmmmm, if I were to see someone I recognise sitting at those tables, I would probably find myself freezing…”) had flickered through my brain, I actually did see someone I recognised, and even before I had consciously noted that the pattern recognition system of my defective brain had identified a match with the increasing numbers of posts in the “database”, my knees had stopped working… As an immediate result, my feet were completely stuck to the brand new floor. Unfortunately, the rest of my body hadn’t been made aware of this sudden change of priorities, and therefore continued in the previously agreed direction. Before I knew it, my knees were hitting the aforementioned floor (ouch!) and my adrenaline levels skyrocketed. The most unexpected thing is, would you believe it, that I didn’t drop my tray!!!! The other guests in the restaurant applauded as I got back up on my feet, with the tray still intact. I made a sort of curtsey and handed over the tray to the man who completely unknowingly put me in this awkward position by being someone I knew; one of my PhD supervisors as well as a neurologist. He completely understood why I was looking like I was glued to the floor, as did the person he was having lunch with; a professor in neuroscience, and the former came to help me. I have no idea how, but I made my way towards my surprised colleagues and we left the restaurant full of people with an interesting story to share at the dinner table. My knees were tender from the impact, but more than that, my ego was badly bruised…

When the shock had settled slightly, I decided that I would do my best not to let this limit my life any more than absolutely necessary so after some Facebook facilitated advising with a few people around the world, I decided that I needed a new friend. The decision did not come easily and using it still takes a lot of “pride swallowing”…

Would you help me choosing a name for her?

To be continued…

Konferens om och med RIKTIG patientmedverkan?

OmstartDe senaste dagarnas gensvar på mina inlägg “Nu får det vara nog!!!” och “Förslag på kontrollfrågor för RIKTIG patientmedverkan” har på samma gång gjort mig väldigt glad och väldigt bekymrad.

Glad för att det såklart är roligt att höra att även andra tycker att en fråga man brinner för också är viktig för andra.

Bekymrad för att jag ännu tydligare inser att detta är en fråga där vi borde kommit längre…

Jag vill nu verkligen försöka se om vi tillsammans kan göra något åt detta!

Min dröm/målsättning är att en konferens om och med RIKTIG patientmedverkan kan arrangeras inom ett år från nu. Jag inser att detta kommer bli svårt, kanske omöjligt, men jag vill ändå försöka.

Det finns inte så väldigt mycket ramar ännu, jag startade en improviserad crowdfundingkampanj på Twitter och Facebook igår och fick ett överväldigande gensvar! Jag startade med att lägga 1 000 kr ur egen ficka och några andra gick med och gjorde samma sak. Så nu är det nog dags att ta detta på allvar! Såklart så är det ju bättre ju mer pengar vi kan få in, men jag uppskattar att med 500 000 kr kommer vi rätt långt. Pengarna behövs främst för att avlöna en projektledare som kan lägga ner tid på detta, så att det kan bli en RIKTIGT bra konferens. Det går ju också att komma långt med frivilligarbete och där har jag redan fått erbjudanden från personer som vill hjälpa till på olika sätt:

Om du vill ha löpande information om planerna på en

Konferens om och med RIKTIG patientmedverkan
“Av patienter, med patienter, för alla som nån gång kommer vara patient och för vårdgivare som vill bli RIKTIGT bra!”

fyll i nedan. Om du vill och har möjlighet, så kan du också välja att stödja planerna på en konferens ekonomiskt. Inga pengar betalas nu. Fyll även i om du vill bidra på något annat sätt.

Dela gärna detta inlägg!

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Förslag på kontrollfrågor för RIKTIG patientmedverkan

onlinesurveyJag blev faktiskt lite överraskad av gensvaret på mitt inlägg igår. Visst har jag hört personer, som liksom jag har tröttnat på alla vackra ord om hur viktiga patienterna är, för att sedan återigen bli “tagen som gisslan” i någon kommittée eller projekt som kommit på att dom behöver kunna kryssa i rutan för “patientmedverkan”, men jag blev glatt överraskad av hejaropen och medhållet som kom från alla möjliga yrken och specialiteter inom det breda område som jag hellre kallar “hälsa” än “hälso- och sjukvård”.

Blogginlägget igår föregicks av en rätt intensiv diskussion på twitter kring ett av exemplen jag nämner i min lista och i samband med det så föreslog jag några kontrollfrågor för RIKTIG patientmedverkan. Jag tänkte upprepa de frågorna här och vill gärna ha kommentarer, synpunkter och diskussion. Kom igen nu!

 

 

Kontrollfråga 1: Varför?

Varför vill organisationen/projektet/företaget engagera patienter? Vad vill man uppnå med att engagera patienter? Vad ser man att patienterna kan tillföra? Vilka förväntningar har man på patienternas medverkan?

Kontrollfråga 2: Hur?

Hur går det till när man engagerar patienter? Vilka möjligheter ger man patienterna att bidra till det de engagerats för? Hur säkerställer man att patienterna får det inflytande och de befogenheter de behöver för att kunna göra ett bra jobb? Hur möjliggör man patienternas medverkan genom att ersätta dem för utgifter, kostnader och nedlagd tid?

Kontrollfråga 3: När?

När i processen engageras patienter? Tas de med först när resultatet ska godkännas och de bara förväntas hålla med (annars ses de som besvärliga och tillfrågas inte igen…)? Eller tas de med på ett konstruktivt sätt för att bidra till en ärlig utvärdering? Ges de kanske till och med möjlighet att delta aktivt i genomförandet innan det ska utvärderas? Tar någon kanske ett sådant djärvt grepp att patienter får vara med och designa? För inte finns det väl många exempel på där patienter getts genuin möjlighet att bidra redan från planeringen och vidare genom de tidigare nämnda stegen?

 

Dessa var de kontrollfrågor jag nämnde på twitter och jag tar på intet sätt åt mig äran av att ha kommit på dem själv, medskyldiga är: @Durgastoolbox @Doctor4Quality @hannek12 @Gripenfighter @ElenaNoMad och många fler.

I diskussionen som följde på twitter kom följande tillägg (omnumrerade för ordningsföljdens skull):

Kontrollfråga 4: Var? (av @KennethJohnson_)

Var i organisationen är patienter med? På alla nivåer? Varför/varför inte?

Kontrollfråga 5: (av @Durgastoolbox)

Är NI beredda att förändras när ni engagerar patienter? #patientengagement = #profengagement

 

Kommentera gärna!!!

Nu får det vara nog!!!!

14771681-stop-button-3d-red-glossy-metallic-iconHelt mot bättre vetande och med dåligt samvete för att min familj återigen ser mig jobba långt efter arbetstid… Detta måste sägas:

 Nu får det vara nog!!!!

 Hela vård-Sverige pratar tills dom blir blåa i ansiktet om patientmedverkan och hur patienterna ska engageras och kunna vara mer aktiva, och visst, tanken är ju god…

För mig är det helt självklart att detta är vägen framåt som jag skrivit i tidigare bloggar här (på engelska: “Tokenism or talent” och “Patient engagement???“).

Men herregud, hur svårt kan det vara????

Det heter ju patientmedverkan av en anledning!!!! Att vi patienter ska kunna medverka i arbetet att förbättra vår egen hälsa…

Detta kan jag prata i dagar om, men jag ska ge tre högst aktuella exempel på hur det kan bli så fel ibland. Och jag menar inte på något sätt att dessa exempel är de tre värsta eller allvarligaste. De råkade bara just idag vara de tre mest aktuella i mitt medvetande.

  1. Myndigheten för vårdanalys. Denna relativt nya myndighet har som uppdrag att:
    Från myndighetens hemsida: Myndigheten för Vårdanalys har till uppgift att ur ett patient-, brukar- och medborgarperspektiv följa upp och analysera verksamheter och förhållanden inom hälso- och sjukvård, tandvård samt verksamheter i gränssnittet mellan vård och omsorg.
    Jag tycker personligen att denna myndighet gör ett utmärkt jobb och driver ett bra analys- och granskningsarbete. Min förvåning blev dock stor när jag fick höra att de inte har någon patient i sin styrelse… Visst, de har ett “Patientråd”, men det är ju inte riktigt samma sak…
    Bättre kan ni, Vårdanalys! 
  2. Nya Karolinska Solna.
    Från hemsidan: Uppgiften för det nya universitetssjukhuset, som tar emot den första patienten i slutet av 2016, är att bedriva den mest avancerade sjukvården samt grundforskning, patientnära klinisk forskning och utbildning.Detta gigantiska projekt siktar högt, med all rätt och man deklarerar stolt att:
    Från hemsidan: Det viktigaste ledordet för Nya Karolinska Solna är “patienten alltid först”. Det innebär att all planering av sjukhuset sker utifrån vad som är bäst för patienten.
    Då skulle man ju kunnat tro att de varit så listiga att de faktiskt engagerat en eller annan patient i ledningen och styrningen av projektet, eller hur? Men, nejdå, inte här heller….
    Bättre kan ni, NKS! 
  3. Tidningen Dagens Medicin ordnar seminarier på temat “Framtidens sjukhus” i Göteborg och Stockholm. I programmet står att läsa:
    Framtidens sjukhus är patientens sjukhus – men hur ser det ut? Hur skapar vi lösningar för framtidens specialistvård som lever upp till patienternas behov och förväntningar? Hur kan vi skapa en helhet av dagens fragmenterade sjukvårdssystem som förbättrar tillgängligheten, kvaliteten samtidigt som det är ekonomiskt hållbart?
    Det låter ju jätteintressant och väldigt angeläget! “Patientens sjukhus”… äntligen!!! Jag läste programmet… noga… om och om igen… men, nej… Inte heller här finns några patienter…. Suck!!!
    Bättre kan ni, DM!

 

Jag har fått nog och jag vet att jag inte är ensam. Det är dags att göra nåt!

Jag drömmer om att se en

konferens med RIKTIG PATIENTMEDVERKAN

Jag är samtidigt extremt medveten om att jag egentligen inte har tiden att dra detta jättelass… Vem vill vara med och hjälpa till? Kommentera på detta inlägg.

 

p.s. Om jag har felaktig information angående något av exemplen, blir jag bara tacksam om du påpekar det, i detta fall blir jag glad om jag har fel och det finns (tyvärr) gott om dåliga exempel att ta av ändå…

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