“But Sara, why would patients want to do research on themselves anyway? Isn’t it better if you all just give your data to a proper researcher?”

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.

Continue reading ““But Sara, why would patients want to do research on themselves anyway? Isn’t it better if you all just give your data to a proper researcher?””

Some key aspects of patient-centered research

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:

Tom Isaacs, who was diagnosed with Parkinson’s disease at age 29, found himself frustrated with the state of research into a cure for the disease. He raised money by walking the full distance around Great Britain and co-founded the Cure Parkinson’s Trust (CPT) to “fund research to slow, stop and reverse Parkinson’s”. Tom’s contributions to changing how research in Parkinson’s is being conducted, especially how patients are being included more these days, cannot be overestimated.

Emily Kramer-Golinkoff, who was born with the rare disease cystic fibrosis,  co-founded, similarily to Tom, a charity aimed at curing her own disease. The charity Emily’s Entourage, was founded to leverage the power of community in the fight against CF. Read more about Emily here and watch her at the conference Stanford Medicine X here and here

Dana Lewis, who was diagnosed with type 1 diabetes at age 14, is probably most known for having designed her own pancreas using a RaspberryPi mini computer (read more here and here). But Dana is also PI (Principal Investigator, the title of the person leading a research project, a pretty big deal among researchers) of a project called Opening Pathways, exploring “the processes around discovery, research, and innovation in health and healthcare”. 

The British Medical Journal’s patient partnership strategy, launched in 2014. The initiative is spearheaded by Tessa Richards, who is a physician, a family caregiver and a patient. The strategy has, among other things, resulted in a change in BMJ’s editorial process: authors of research papers are required to document if and how patients and the public have been involved in the study apart from being research participants. The document can be seen here. Read more here and here

Benefits of patient-centered research

According to articles published in scientific journals, involving patients in clinical research beyond their obvious role as research participants, can contribute to:

  • making the research more relevant to the people its aiming to help
  • improving research questions and outcome measures
  • improving trial recruitment and representativity
  • improving trial experience and adherence to treatment
  • reducing dropout rates
  • improving dissemination of results 
  • increase the likelihood that research results lead to changes in healthcare and/or policy 
  • financial benefits

Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14.14.

Hoos A, Anderson J, Boutin M, et al. Partnering with patients in the development and lifecycle of medicines: a call for action. Therapeutic Innovation & Regulatory Science. 2015;49:929-939.

Levitan B, Getz K, Eisenstein EL, Goldberg M, Harker M, Hesterlee S, et al. Assessing the Financial Value of Patient Engagement: A Quantitative Approach from CTTI’s Patient Groups and Clinical Trials Project. Ther Innov Regul Sci [Internet]. 2017; Available from: http://journals.sagepub.com/doi/pdf/10.1177/2168479017716715

Staley K, Minogue V. User involvement leads to more ethically sound research. Clin Ethics. 2006;1(2):95–100.

But what is patient-centered research?

I can honestly say that I am not sure myself and there is a wide range of different types of research on the continuum from fundamentally basic research on cells in a lab to the kind of patient-driven research that, among others, Dana and I are conducting. I have listed some aspects that I believe are key to truly patient-centered research, partly based on BMJ’s document for authors submitting research papers (link here).  

Key aspects in patient-centered research:

  1. All scientific articles are published open access. I strongly believe that no research can be patient-centered unless all scientific articles are published open access. On the flip-side this means that also lab-based basic science can also incorporate patient-centered aspects.
  2. Research designed with patients. This means that patients are included as an equal partner when choosing research methods, formulating research questions and choosing the outcome measures/clinical endpoints.
  3. Continuous improvements. Feedback from patients is collected continuously during the study and used for improvements.

What do you think? Do you agree with me? Have I missed important aspects? Do all criteria have to be fulfilled for research to be considered patient-centered or can there be levels? Please add your thoughts in the comments.

What is a ‘spetspatient’?

The report “Spetspatienter – en ny resurs för hälsa” (only in Swedish I’m afraid)

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’?”

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


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”