Stolt spetspatient!

Rapporten “Spetspatienter – en ny resurs för hälsa”

Igår var en stor dag: projektet “Spetspatienter – en ny resurs för hälsa” släppte en rapport med samma namn, se bilden. Spetspatient är ett ord som jag hittat på och i rapporten kan du läsa mer, se rapporten här

Såhär står det på rapportens baksida:

Spetspatienter – en ny resurs för hälsa
Ordet spetspatient kom till som ett försök att återta ordet patient och vända det till något positivt. Spets- patient utsågs till ett av Språkrådets nyord 2017 och i denna rapport kan du läsa mer om hur begreppet kom till. Rapporten är författad av medverkande i projektet ”Spetspatienter– en ny resurs för hälsa”, som har stöd från Vinnova. Bland projektparterna finns patienter och patientorganisationer, vårdgivare och hälso- och sjukvårdsorganisationer, forskare samt företag och tillsammans vill vi utveckla en ny typ av patientdelaktighet. Vi ser att om vi bättre kan använda kunskapen, engagemanget och viljan som finns hos spetspatienterna så kan hälso- och sjukvården bli bättre för alla patienter.

Kunnigare patienter gör alla till vinnare!

Continue reading “Stolt spetspatient!”

Walking revolutionised

My new friend Potemkin meets my furry friend Shiva

Tuesday last week, I got myself a new friend. I have namned him Potemkin and you can see him in the photo here, being examined by another good friend of mine, Shiva the cat. We had no idea what a suitable name we gave him, he really is a “god of destruction”. Just come to our place in the countryside in the summer to witness the carnage for yourself.

But I digress, this post is about my new rolling friend Potemkin.

In this post I will use the Swedish word for a mobility aid with 4 wheels intended for providing support when walking, which is “rollator”. Continue reading “Walking revolutionised”

Ethics and PhD

Background

A few days ago I had some disappointing news. I have been working on my PhD in the area of digital selfcare and self-tracking in Parkinson’s disease since 2012, which is probably starting to be a bit too long. I was therefore very happy to be able to submit my application to defend my thesis before the university went on summer holiday. In the application I aimed for thesis defence in late November, the examinators and the opponent had confirmed their availability and I was starting to looking forward to D-day. Of course I was well aware of the potential obstacles that were left to clear. The vetting of an application to defend a doctoral thesis at my university entails two separate parts. The first part checks things like that any of the supervisors (current or previous) have not published anything with any of the examiners or the opponent and that the scientific articles that the applicant wants to include in her thesis are of sufficient quality and extent to be equivalent of at least four years full time work. The main supervisor also submits her statement of the doctoral student’s learning process and development during her time as a doctoral student. The second part of the vetting is dedicated to ethical aspects.

Continue reading “Ethics and PhD”

A small round white pill

One of my containers for my morning doses with one morning dose laid out.

Every morning I have my phone alarm set to ring at 6 am. Every morning, weekday or weekend, workday or holiday, because at 6 am I take my first dose of medication. I take six different pills for my Parkinson’s disease, one to make up for not having a thyroid and one contraceptive. I prepare my morning doses a few weeks at a time in containers with one compartment for each day of the week (see photo) and keep next to my bed together with a bottle of water. That way I can take my meds while still in bed and more often than not, I will go back to sleep for a while longer before getting up. This way the meds will have kicked in when I rise and moving will be a bit less difficult. Continue reading “A small round white pill”

The finest compliment I ever had

Today I learnt that Tom Isaacs, President and co-founder of the Cure Parkinson’s Trust died very suddenly and unexpectedly yesterday morning. Tom is (yes, he still is) one of the most well-known PwP (people with Parkinson’s) in the world and has contributed so much to the global PD community. The world has lost an amazing leader and trail-blazer of the inclusion of patients’ voices on every level of PD research and I have lost a friend, role-model and mentor. Continue reading “The finest compliment I ever had”

What is in a fall?

imagesBefore my Parkinson’s had evolved into the kind with “freezing-of-gait”, or FOG for short, that now is far more familiar than I would like, I had a very hard time to wrap my head around the phenomenon: “Why do they just stand there? Why don’t they just lift their feet and walk like they did just a second ago?” Well, these days I know better… Continue reading “What is in a fall?”

From The White House to the red house

27391430571_c3a2c63c46_hLast week was a week of contrasts for me. On Tuesday I left Stockholm for New York City and the purpose of my trip was to attend a workshop at The White House in Washington DC. The workshop was on a topic very close to my heart: engaging participants as partners in research and it was organised jointly by the conference Stanford Medicine X and the Office of Science and Technology Policy at The White House. The intention from the organisers was to, by using design principles, 1) identify what’s working, 2) strengthen the community of innovators in the area, and 3) accelerate progress.

The amazing dr Larry Chu, anaesthesiologist at Stanford and executive director of the most patient-centered conference in the world, Stanford Medicine X.
The amazing dr Larry Chu, anaesthesiologist at Stanford and executive director of the most patient-centered conference in the world, Stanford Medicine X.

Exploring opportunities and challenges relating to engaging participants as partners in research is of course important. But I think there is also a bigger issue at play here, namely WHY we should engage participants as partners in research in the first place. In an article from 2015 called “We the scientists”: a Human Right to Citizen Science (Vayena E, Tasioulas J. “We the Scientists”: a Human Right to Citizen Science. Philos Technol. 2015;28(3):479-485. doi:10.1007/s13347-015-0204-0.) , authors Vayena and Tasioulas discuss the human right to science and connects it to article 27 of the 1948 Universal Declaration of Human Rights. Vayena and Tasioulas argue that participation in science should range from being a professional scientist to being a participant in a conventional clinical trial performed by professional scientists but also include more active participation in the form of e.g. individuals contributing data or observations, collaborating with researchers on funding research, setting the research agenda, and participants even taking the lead in initiating, designing and carrying out the research themselves.

And if a reference to the Declaration of Human Rights is not enough

Claudia Williams, Senior Health and Health IT advisor at The White House and co-convener of the workshop, with Nick Dawson, Executive Board Member, Stanford Medicine X.
Claudia Williams, Senior Health and Health IT advisor at The White House and co-convener of the workshop, with Nick Dawson, Executive Board Member, Stanford Medicine X.

to convince you, consider this: In the ‘dark ages’, before the Internet, knowledge was scarce. If you wanted to learn medicine, you had to go to university to study. Sure, you could pick up bits and pieces in books at the library but on the whole, (medical) knowledge was difficult to come by on your own. Times are very different now, we can all learn literally everything we want, using the tools and information available to us online. And in my opinion, it is a good thing that knowledge is democratised and available, it offers us plenty of opportunities but also a few significant challenges. One of the most exciting opportunities, and if you ask me, probably the best thing since sliced bread, is that we are now so many more people that can access the knowledge necessary to collaborate to solve the many remaining medical mysteries, like how to cure cystic fibrosis, cancer or genetic prion disease, or how to design better cardiac defibrillators or closed-loop-glucose-monitors-insulin-pumps or stoma bags and also how to enable us all to communicate across obstacles caused by injuries or diseases. Slightly more discouraging is that we are basically still doing research in the same old way as we did in the not-so-long-ago pre-internet days. Why are we doing that? Wouldn’t you say that it is an extreme waste of great minds with so much to give to NOT engage participants as partners? Who can be in a better position to help tease out which issues research should focus on than we, who are living with these diseases every hour of every day?

When I returned to Sweden, I went straight to our place in the Swedish countryside (see pic below), where my family owns a few houses right by a lake in the beautiful area of Bergslagen. The red house is my absolute favourite place in the whole world and as I was enjoying “fika” with my family, telling them about my travels, I was struck by the extreme contrast between The White House and the red house and that I am very fortunate to be able to experience such a wide range of environments. The work we all did at that workshop in The White House is a step in the right direction. My hope is that the work we started in The White House will lead to scientific progress so that many more of the Emilys, Hugos, Erins, Michaels, Danas, Sonias, Matts, Corries, Annes, Dougs, Jelicas, Cliftons, and Saras of the world can spend more time in their “red houses”. And I think it is possible, because these issues are too important not to deal with. These issues matter to people both in The White House and in the red house!

Here is a link to information on the event on the website of Stanford MedicineX

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Eli Pollard, executive director of the World Parkinson Coalition and myself in front of the entrance to The West Wing

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In front of my favourite place on earth, our place in the Swedish countryside, where we spend as much of our free time as possible. The log house is painted in the red colour traditional to this area.