Authors: Sara Riggare, Therese Scott Duncan, Maria Hägglund.
In the Merriam-Webster dictionary, ‘advocacy’ is defined as: “the act or process of supporting a cause or proposal”. The same source defines ‘activism’ as: “a doctrine or practice that emphasizes direct vigorous action especially in support of or opposition to one side of a controversial issue”. This post is a follow-up to a pre-congress course on advocacy and activism that was given at the 5th World Parkinson Congress (WPC) in Kyoto June 4-7 2019 (Scott Duncan, Raphael, et al. 2019). The focus of the course was on the more action-oriented concept of activism and the course was based on research from Karolinska Institutet in Stockholm, Sweden. The research has resulted in a framework outlining some of the different roles patients can take when dealing with their health issues. The purpose of this post is to provide a background for and description of the framework as well as outline some of the ways it can be used.
Edit on 16 December 2020: I am now almost back to “normal” (whatever normal is when living with a progressive illness…). Looking forward to relaxing over the holidays.
Tracking has probably never been more talked about than right now, during an ongoing global pandemic. Having an interest in self-tracking, I have of course followed the development with great interest, both on a global level, as well as on a national, regional, and local level. My interest on an individual level so far, has mainly been focused on trying to make the right decisions to avoid getting infected with COVID-19.
However, a few days ago, my personal interest in tracking COVID-19 increased, when I started noticing symptoms consistent with a COVID-19 infection. I have since then tested positive for ongoing infection and in this post I want to share a few learnings from my first few days.
I think that those who know me will agree that I am not often lost for words. However, when the question in the title of this post was posed to me, I can definitely say that I didn’t know what to say for, what at least felt like, a really long time.
It is a truth universally acknowledged that many patients no longer settle for contributing to medical research only as participants in research studies. Over the last decade or so, patients have increasingly made their voices heard in all nooks and crannies of the research process. Some of my favourite examples include:
My non-Swedish speaking friends may have been wondering what I have been up to lately. And it’s a fair question, since I haven’t been blogging much in English for a while. For the last two years or so, I have been leading a project aiming to change the perception of patients, both among healthcare professionals and similar but also change how we patients see ourselves and our roles in our own health and care. The project is called: “Spetspatienter – en ny resurs för hälsa” (or in English: “Lead Patients – a new resource for health”) and it is funded by the project partners and Vinnova, which is the Swedish Governmental Agency for Innovation Systems. Continue reading “What is a ‘spetspatient’?”
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.
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.
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.
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”