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.
More about the project later. First, what is a “spetspatient”? Well, to explain that we have to go back a few years. The first time I came across the expression “e-patient”, I immediately related. The term was coined by MD Tom Ferguson, “to describe individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. He envisioned health care as an equal partnership between e-patients and the health professionals and systems that support them.” (From the introduction to the e-patient White Paper). One of my absolute favourite conferences, Stanford Medicine X, is also a leader in supporting e-patients. I definitely identify as an e-patient and I have met plenty of patients and informal caregivers who also easily fit the description, both in Sweden and in other countries. Since the Swedish language didn’t have an equivalent word, I started using e-patient (with a Swedish pronunciation) in conversations and presentations. But, for some reason, the word didn’t really stick. Very few people besides myself started using it.
A few years went by and one day in February 2016 I came across a “funny” music video online. It was called “Googla aldrig dina symtom” and featured an MD playing guitar and singing about all the bad things that happens if you Google your symptoms instead of just listening to your doctor. (The same song was recently released in an English version: “Never Google your symptoms” and also evoked a blog post by the wonderful Susannah Fox.) The video resulted in plenty of comments on the site that first posted it (link to comments in Swedish here), from both patients and other doctors. Most of the comments thought that the video demonstrated an outdated and inappropriate view of the patient-doctor relationship and that it was a mistake of the singer/songwriter to post his video. I won’t bore you with the details of my own reaction, let’s just say that I was unimpressed…
But, something good came out of this: my frustration triggered a new train of thought. I realised that the way that so many patients and informal caregivers tackle the health challenges they are faced with, reminded me of the concept of ‘lead users’. ‘Lead users’ is a term coined by the American economist and innovation researcher Eric von Hippel. It is used to signify “users of a product or service that currently experience needs still unknown to the public and who also benefit greatly if they obtain a solution to these needs” (Wikipedia). An example of a lead user innovation is how the mountain bike industry started: in the 1970s a group in Northern California started riding their bikes on mountain trails. They soon realised that if they modified their bikes, the ride would be less uncomfortable. In time their “garage hacks” evolved into the huge industry it is today.
I found that the Swedish word for ‘lead user’ is ‘spetsanvändare’ where ‘spets’ means something pointy, like an arrowhead (‘pilspets’), the point of a needle (‘nålspets’), or someone in the lead (‘i spetsen’). As you may have guessed, I simply exchanged ‘användare’ for ‘patient’ and the new word ‘spetspatient’ was born. As you may remember, this happened in February 2016 and I started using the word myself in discussions and presentations. Contrary to when I started using the term ‘e-patient’, the term ‘spetspatient’ seemed to stick better. Several of the people I mentioned it to started using the term themselves and a Google search of the word ‘spetspatient’ today, yielded almost 5 500 hits. That’s not bad for a word that didn’t exist 3,5 years ago!
During 2016 I was involved in a number of discussions with different organisations interested in exploring patient engagement in new ways. These discussions resulted in a joint application for funding from Vinnova and in May 2017 we started working on the project “Spetspatienter – en ny resurs för hälsa” together. The 15 project partners include patient organisations, healthcare organisations, other publicly funded organisations and regions, academia, and companies. Earlier this year we launched the report seen in the photo above (only available in Swedish unfortunately) and in November we are organising a conference.
The word ‘spetspatient’ was born from my frustration with the patient role and I made an attempt to sort of reclaim the word ‘patient’. In hindsight I can see indications that it has contributed to the ongoing paradigm shift in healthcare from seeing patients as passive receivers of healthcare to active co-producers of health.
Boy oh boy do I love this idea. We might say in English a “leading edge” patient – absolutely!
Did you know von Hippel has been extending his innovation research specifically into healthcare? If you want, later I’ll come back with links he posted on the SPM Connect website a couple of months ago. He published an open-access article “When patients innovate” (in Sloan Management Review, I think) as a follow-up to his book “Free Innovation,” which seems to be about what you describe, except the book (a few years old) is not specific to healthcare.
There’s so much to this subject – you’re right – but that’s enough for now. A slightly different version of his article title, tuned to your terminology, might be “When patients lead.”
Thanks Dave, glad you like it!
Does “leading edge” convey what you mean?
Did you know von Hippel has been extending his innovation research specifically into healthcare?
Here’s his Sloan Mgmt Review article: https://sloanreview.mit.edu/article/when-patients-become-innovators/
And here’s his faculty page with the free download of his “Free Innovation” book https://evhippel.mit.edu/books/
Yes, I think ”leading edge” is probably a good equivalent.
I have certainly been following von Hippel’s work in healthcare, for example in rare disease communities: Oliveira, P., Zejnilovic, L., Canhão, H. and Hippel, E. von (2015) “Patient innovation under rare diseases and chronic needs”, Orphanet Journal of Rare Diseases 2015, 10 (41) (http://www.ojrd.com/content/10/1/41)