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….
In 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:
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?
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?
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.
In the discussion following the Swedish blog post, a few additional questions were suggested:
Where in the organisation are patients engaged? On all levels? Why/why not?
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!
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:
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
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?
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 .
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!
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.
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.
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!
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.
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…
De 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…
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!
Jag 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!
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?
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?
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):
Var i organisationen är patienter med? På alla nivåer? Varför/varför inte?
Är NI beredda att förändras när ni engagerar patienter? #patientengagement = #profengagement
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…
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.
Jag har fått nog och jag vet att jag inte är ensam. Det är dags att göra nåt!
Jag drömmer om att se en
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…
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…).
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?
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:
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????