Episode 7 – transcript

Transcribed by Josanne Ruitenberg. Click here for the audio file


Tamar: Dear listeners, before we begin the episode I’m going to be rude and ask you for money. I guess this is especially meant for Dutch listeners, but if you happen to be an international billionaire… well, I’m grateful for your contribution, too! This podcast is a labor of love, and if you didn’t know: podcast making can be quite expensive. We’re really happy with our Patreon sponsors and we need more of you! Visit www.patreon.com/ziekdepodcast and donate to our podcast if you’re interested. Thanks a lot!


Dear listeners, welcome to Ziek. De podcast. My name is Tamar Doorduin and I am your host, taking you with me to the land of the sick and the ill, or, as I would say in my native tongue – Dutch – to the lappenmand, which literally translates to rag basket. I live in the Netherlands and this podcast is usually in Dutch, but for this miniseries I make an exception, as I interviewed Swedish patient advocate and activist Sara Riggare.

If you haven’t yet listened to the first episode in this series, it’s probably a good idea to go back first so that you know the background story of how Sara got sick and what kind of #DoctorDrama she experienced. However, if you’re not very patient and you just want to dive into what Sara has got to say about her patient advocacy nowadays, I won’t blame you either and I think you will still find the current episode very interesting.

So, in the first episode of this series, Sara talked about how she had her first symptoms when she was thirteen, and how she initially got the diagnosis ‘Dystonia’, but eventually learned – quite by accident – that she actually had Juvenile Parkinson’s Disease, which is a rare form of Parkinson’s.

We start this second part of the interview where we left off, which is with the fact that Sara felt that the Dystonia association, where she was an active member, was no longer her rightful place to be a patient advocate. Instead, she joined the Parkinson’s association. However, this was kind of a culture shock to her.


Sara:              I changed teams in a way, I’m entering a space where there were so much more older people. Dystonia wasn’t as strictly an older population as Parkinson’s, so that was a bit interesting as well.

Tamar:          How did you feel about it?

S:                   I was in my twenties; it wasn’t the most fun thing I’ve done I must say. To go to these sort of information meetings at elderly living facilities. No, it wasn’t ideal. But I learned a lot from it. After a couple of years, I was contacted by a person in Stockholm who wanted to start a local branch for younger people with Parkinson’s. People younger than… I think we started at 50. People younger than 65, so people of working age for instance. Not really a youth organization, but still younger people with Parkinson’s.

T:                   It’s relative.

S:                   It is relative. And that’s really where it started. We met at the pub once every month. We had sort off an open invitation for anyone, just like: “Come meet us, we’ll be here!” between 6 and 8 or something. People came and had a beer, had a chat and changed experiences. Some people only came once and then never came back and some people came regularly. It became a network. We also organized more formal conferences and similar things along these lines as well.

S:                   And then I started exploring things, I wanted to do more. I realized I wanted to help patients understand research and vice versa. With my engineering background -I have a master’s in chemical engineering- I could sort off get by. I could read the scientific articles and understand them. So-so at least. I could sort off get through them and understand the main points. I wanted to do that in a more organized way. Have you read the book series The Hitchhikers Guide Trough the Galaxy?

T:                   No, I haven’t.

S:                   Well, they talk about the Babelfish. Which is an alien fish that you put in your ear, that translates every language.

T:                   You wanted to make that?

S:                   I wanted to be a babelfish for Parkinson’s, between patients and researchers.

T:                   That’s so important!

S:                   I realized that, to be taken serious by researchers, you had to be a researcher yourself. And I wasn’t. Then my husband said: “Why don’t you become a researcher?” No, I can’t do that? But then I thought: maybe I can?
This was in 2010. I was living in Stockholm, the Karolinska institute is local here. I figured I could check their website. Everybody had a website, it was 2010. I found a master’s program in Health Informatics that you can apply for that started at august in 2010 and this was the last week to apply for the program. So, I did! And I was accepted!

T:                   Very impulsive! Wow! But what I don’t understand is, why did you have to be taken seriously by researchers. Because you basically wanted to translate the research to patients…

S:                   Yes, but I also wanted to translate the other way around, so I wanted to translate for patients to researchers. I wanted to be the spokesperson. And so, what I figured out, to research, I needed to do a doctorate. I don’t think I thought that far at that point, I just thought: ‘I need to get to know people in medicine’, so that’s when I started at the Karolinska institute.

T:                   Was it a good master?

S:                   Oh, yes! I mean, we were 46 students from 13 different countries on the first day. Ages from 22 to 46.

T:                   So, you weren’t the only one who was doing a career shift?

S:                   No, I wasn’t. I used to describe it that every day felt like a UN convention. People literally from all over the world.

T:                   So, you all needed to be babelfishes

S:                   We needed to be babelfishes. Half of us had a medical background and half of us had a technical background.

T:                   And were there more people like you, who were patient advocates?

S:                   There was actually! A woman from Irak. She was born in the US, but from Irakie decent. She has MS. She started the same program as me and we had a lot of interesting discussions. This was the first year of that master programme, and every year since there have been a couple of patients who have entered the program, entered the field of health informatics.

T:                   So, what did you learn as a Health Informatician?

S:                   Health informatics is basically the research and theories behind e-health. So, it’s all use of information and communication technology in health and health care. So, everything from online health records, to patient portals, to medical databases programming, to apps, basically everything used in information and communication technology in health and health care.

T:                   Using it online or trough technology, so not the face-to-face communication?

S:                   Yeah, but also sort off very theoretical clinical decisions support systems or artificial intelligence algorithms. So, it’s a very wide field actually. And then there’s sub-fields. I’m very much focused on the field of personal health informatics or consumer-health informatics. Then there’s nursing health informatics, medical health informatics, there’s all sorts of health informatics. It’s a wide field

Spetspatienter (or ‘Lead Patients’ in English)

T:                   So, I got to know you because of this word ‘spetspatienter’ that you came up with. Was that already in that period?

S:                   No, ‘spetspatienter’ is a word that I made up or came to coin in 2016. I started the Health Informatics master’s programme in 2010 and in 2012 I started my doctoral studies. I’m a doctoral student at the department of Learning informatics and management at the Karolinska institute. During that period, and in 2016, I’ve always been a patient advocate / patient activist, also in my research.
I’ve always been a bit envious of the use of the word e-patient, which was invented or coined in 2007 or around that time by a doctor in the US called Tom Ferguson. So, I’ve tried to use the word e-patient in Swedish but it hasn’t worked. No one has taken it up or used it. And then in in the UK they have e-patient but they also have expert-patient as an expression. And that hasn’t worked either in Swedish, I tried it as well.
‘Petspatienter’ was sort off the third attempt at having a word for something that me and so many other patients do every day. And since we hadn’t had a word in Swedish for it, we couldn’t talk about it. You can’t talk about if you don’t have a word for it. So, if you have to say a whole sentence, people get tired from talking about it. So, I was frustrated.
In 2016 I was frustrated again by how health care, and specifically some doctors, view patients as needy and how they say: “don’t Google your symptoms, never Google.” And the word ‘spetspatienter’ was a reaction to that.

T:                   how would you explain the word ‘spetspatienter’ for people outside of Sweden?

S:                   If they’re American and they know what an e-patient is, I would say it’s the Swedish word for e-patient.

T:                   Dutch people don’t know it

S:                   in the area of research about design and technology there’s a word called lead-user, which is a word for people who experience a need that you can expect a large group of people to experience later. But this group experience that need sooner and they also act on that need and they do something about it. So for example: the area of mountain biking started in the 1970’s in California by people who were biking enthusiasts, who used ordinary bikes and road them on forest or mountain tracks because they thought it was fun to ride their bikes in the mountains or in the forest. Then some of them, specifically one man who had an education as a bike frame constructor, he adapted his bike. He made it sturdier with a more durable frame. That was the start of a whole industry in biking – the mountain bike. So, he, and these early users that adapted their bike, they are called lead-users.

T:                   So, it’s because of their circumstances

S:                   They have an interest, or a need and they also have the ability to do something about it.

T:                   So, both things. They have a need and they have strategies to get that need met.

S:                   Or opportunities or ideas and they find ways to do something about it.
Another example is people who wanted to video record their skiing. They used scotch tape to tape their mobile phones to their ski helmets. And then they started thinking: ‘maybe we should build a separate camera’ and the Go Pro came out of that. So, the Go Pro industry, it’s sort of an action camera, is an expansion of that. These people are called lead-users. These people who start to try and test new things. In Swedish the word for lead user is ‘spetsanvändere’ and then I just switched ‘användere’ which is ‘user’ to patient and then we have spetspatient.

T:                   And it worked!

S:                   And it worked, yes it did.

T:                   So, can you give an example of a spetspatienter? That does the same as the mountain biker or the skier?

S:                   Yeah, sure. For instance: in diabetes, the industry, the medical industry, they’ve been talking about looping and making a loop of the treatment. So, connecting a continuous glucose monitor with an insulin pump and making an algorithm do the calculations to automate the treatment. The medical device industry and the medical industry have been talking about this for literally decades and patients have been waiting and waiting for this.
Then a couple of years ago a woman called Dana Lewis, who has had type 1 diabetes since she was a child, she met a man who she is now married to. He kept her program in a Raspberry Pi, a minicomputer. It’s small enough to carry around, like a matchbox, and you can do simple programming on it.
So, they used Bluetooth connecters to connect to her glucose meter and her insulin pump and they made a loop. It turns out that the problem wasn’t technical, the problem was basically a business problem.

T:                   Ah, because they could just do it. They wanted it and they made it work.

S:                   The two devices were from different companies and they couldn’t agree who would get payed for what so that’s why they hadn’t made it. So, Dana is very much a spetspatient. They made this device and they shared the plans; they don’t sell it. It’s not a product. The FDA, the food and drug administration, they have no oversight over it because it’s not a product, no one is paying anyone for this device. They all build their own. They help each other and they share the algorithms on GitHub, an open access platform. So, Dana is a spetspatient and I know her and we met at conferences.

Another person is a UK man who is called Michael Siers, he’s had Crohn’s Disease since he was a child, he’s now 49 – 50 something and he had a bowel transplant in the UK, he was the eleventh person in the UK who got to have a small bowel transplant.

T:                   So that’s something that doesn’t happen yet very often?

S:                   No, this is a couple of years ago though. He had a bad case of Crohn’s disease, and he was given a stoma bag then for the waste. While he was in his hospital bed, recovering from the mayor surgery, he had, as he called it, his first ‘O shit! -moment’. That’s when the bag leaks. It’s not “if” it’s “when”, he tells me. So, he figured: ‘I’ll go online, because of course some smart clever American has made a sensor to tell how full the stoma bag is, so I’ll just order that.’

T:                   Ah, so you need to know, that that is the problem, that it leaks when it’s too full. So, you need to check it the whole time.

S:                   Yeah! So, he wanted to order it, but there was no such device.

T:                   it didn’t exist.

S:                   No. He had not background in design and no background in technology, but he figured ‘I have a problem, I need to solve this’. So, he disassembled a control for a computer game that has some sort of a bending sensor, so he could use it to tell how full the bag was. So, he constructed this device and he has been well payed for it and he is now CEO of the company selling these devices. So, he is also a spetspatienter as you can imagine.

Acting doctor-centric as a patient

T:                   What in your development made that you thought it was so important to talk about this, about spetspatienter?

S: Because I want health care and patients to change their attitudes about patients. Because ‘patient’ is a word derived from Greek, or maybe Latin, not sure now. But it means ‘the one who suffers’. In the old days of course there was a lot of suffering in being a patient. There wasn’t a lot you could do if you had a disease or an injury or an illness. So, basically there was a lot of suffering.
But now, with the development and all the new medicational treatments available to us, there is much less suffering, but the word still means ‘the one who suffers’. So, I wanted to sort off reclaim and enhance the word a bit and make it something more positive. Because being a patient is a very passive and negative and just a very negative word.

T:                   Yeah, and it’s also I think… when I heard about this word and I tried to understand what it meant… how I interpreted it was mostly that there is this idea that patients who want to find out things about their illness who look up the research and who take research studies to their doctors… it’s often perceived as a problem. It’s a problem when you’re a patient that looks up stuff on the internet.
And I can kind off understand that it can be a problem if somebody does that, because there’s also a lot of crap on the internet. So, you have to find the right sites. But I have worked as a researcher, not a medical researcher, but sociology and sexology, so it’s very different, but I’ve worked as a researcher and even encountered this. So, when I tell doctors this: “I know where to look for information” it’s still that they have a hard time with it.

S:                   They think it’s a bit suspicious?

T:                   Yeah, they think it’s suspicious! So, is that something that you also experienced?

S:                   Yes, and I still do sometimes. I tend to behave what I call: ‘doctor centric’. You know, how you talk about how health care should be patient-centered and patient-centric. I say, I’m doctor-centered. Because when I meet a new doctor, a new physician, a new health care professional, I can’t tell from just looking at them if they are the kind that like engaged patients or if they are negative towards it. I’m very careful and cautious initially and I don’t show them how much I know. I don’t tell them my theories. I let them suggest it and then I sort off try and see what kind they are before I show my true self. I adapt to what I think they want to hear.

T:                   Were there times that you didn’t do that, and it went wrong?

S:                   Yes.

T:                   Can you tell me about it?

S:                   So, I went to, I think he was a new primary care physician that I hadn’t seen before, so I said: “I think I have a urinal tract infection.” And they were like “No, why would you think that? No.” And they refused me a test. Because they wanted to assert themselves as ‘knowing more’, so they felt threatened by my presentation of theories.

T:                   So, did they still ask questions about your complaints? Like a medical interview?

S:                   Yeah, they did, but they don’t have a lot of time and basically said ‘well, come back when it doesn’t improve’ and send me on my way.

T:                   And what do you think would have happened if you had not presented this theory?

S:                   There’s no way of knowing of course, I could have been treated exactly the same. But I think that, with this person, if I would have been less assertive and just sort off presented my symptoms, they would have been able to say ‘go take this’. This is just speculation on my part, but it could be that they would have treated me differently.

T:                   I always find it so difficult to do that.

S:                   Yeah, it’s difficult, it is difficult.

T:                   Because it’s also a gamble. If you just present your symptoms you kind of assume that they would reach the same conclusions. But what if they don’t?

S:                   I do hope that they would ask the right questions. But they actually don’t always. It’s difficult.

T:                   Why do you think that the doctors are this way?

S:                   I think they are trained that way. I think the system is adapted so. The medical system is built on the assumption that the doctor always knows best. But now with the internet and everything we all basically have access to all the world’s knowledge at our fingertips. The number of diseases and the number of complaints, it’s developing. It’s just not possible for one person to know everything. So, it’s not unusual for patients to actually know more, especially when what they have is chronical or they have a long-term condition. This doctor may not be an expert in that specific condition and maybe that has an implication on your treatment.

T:                   Yeah, because that’s also the thing, it’s not that you know more than your doctor. It’s just about a certain specific sickness that you have you have looked up the latest research. And that doctor is responsible for a lot of different illnesses and is seeing and treating patients the whole day and maybe has less time than you have to look up the latest research.

S:                   and also, maybe doesn’t know my context which could have implications on the treatment as well. So, it’s, I think, the doctors who are still not perceptive for the idea of e-patients or spetspatienter that are too emerged and too engrained in the old thinking of the paternalistic system and the doctor-knows-best kind of thing.

The medical world as a subculture

T:                   is it a cultural thing?

S:                   I think so, to some extent. But I don’t know exactly because I haven’t really been in Health Care as a patient in other countries than in Sweden.

T:                   I mean more like the medical world as a subculture

S:                   O yes, it’s definitely a cultural thing, very much so. It’s very much hierarchical and a
different structure than the rest of the society

T:                   It’s kind of like as the world becomes more modern or has become more modern, a lot of aspects of society have become less hierarchical. But it seems… why do you think that is? Do you have any theories about that?

S:                   So interestingly, we have a Dutch man as the CEO of the Karolinska hospital in Stockholm.

T:                   O, yeah, that’s right, I think I heard about that!

S:                   He used to be the CEO of Radboud… He actually said that he thought that Sweden and the Netherlands would be similar in the structure in terms of the medical culture, since they are so similar in societal culture. But the Swedish health care is so much more hierarchical.

T:                   Really? Still more?

S:                   I think, he knows. Because he has been in both. It surprised me a bit, but I don’t doubt it. I think he’s right. It’s interesting. Because there is also a sort of national culture aspects to it as well, I think. But I think that health care has this hierarchy because so far it has needed it to organize itself properly, because of the quick decisions that need to be made in critical situations and people need to know what their job is. It’s like a military actually some say, in the emergency care.

T:                   Yeah, that’s right because a lot of medicine is of course also about live and death. I always forget that.

S:                   Yes, that’s how it’s developed. The system that is used in medical care and emergency care was developed in a war. Medicine as an area came out the wars.

T:                   Ah, right. Because the military of course is also super hierarchical

S:                   Exactly, so that’s where I think the heritage comes from. But then we know, acute care has to be organized. But to manage chronic and long-term conditions, you have to act very differently. And that adaption hasn’t been reached in health care to any kind of extend I would say. Because it takes a mayor reorganization to reach the new organization needed for chronic care.

T:                   Also, because you can change the structure or you can like have some idea like: ‘Okay, let’s do this and this different!’ but to change the whole culture, that’s huge. And I always also forget that in large part the medical system is about life and death, because my illness is not about live and death. And I just always forget that that’s there too.

S:                   Yeah, and that’s easy to organize. I mean, “easy” in quotation marks, but that’s where you need hierarchy. You need to check. You have sort off one set of rules that works when you’re gonna do live support. But chronic illness is a different thing. So, in emergency care, when you need to save someone’s live, you don’t need to ask them how much they want to participate themselves, you just do what you need to, to save their lives.

T:                   Yeah, because otherwise you’re too late!

S:                   Yes, but in chronic care you need to collaborate in a completely different way. Because in most chronic cases, I would say all of them, you don’t have one size fits all in treatment. You have to collaborate, physician, medical personal and patient to find the best treatment. You can’t do that as a one size fits all.

T:                   There’s also much more the opportunity to really optimize the treatment and it’s also more important because it’s chronic. It’s like, if you have an illness for a few months it’s not so important if your quality of live is optimized. But like you, you have had it longer than you didn’t have it, than it matters so much.

S:                   Yes, and there’s so much I can do and basically I’m the one who has the most to gain from putting in the work. And then of course I am willing to do that because I have so much to gain from it.

T:                   Yes exactly, and also it works better, it’s more efficient if you and your doctor really work together. Because you have so much more information. That’s so interesting, there should be like a whole news system for chronic patients.

S:                   Sadly enough, there is a suggestion, it was published twenty years ago, but it still hasn’t been adopted in health care. It has been, in parts, there was something called a chronic care model published in 1998.

T:                   O, that’s interesting!

S:                   It’s a really good sort off overview of what should be like system for chronic care.

T:                   And as it takes twenty years for things to be picked up

S:                   But it seems that organization changes take even longer.

T:                   Has it been picked up at all?

S:                   Yeah, there are pockets. But the problem is than that those pockets and those implementations then are in specific diagnoses and specific patients and more and more people also have multiple conditions.

T:                   Is it like, because in the Netherlands I know that there, if you have diabetes or asthma or certain heart diseases, that there’s a whole new system for that.

S:                   Yes, those are some conditions where this model has been implemented more successfully, yeah. You have a network in a different way.

T:                   Yeah, I always feel jealous about that.

S:                   I usually say, I tend to say, that I have diabetes-envy, because they have a very.. of course, I understand that’s a huge simplification, but they have a measure of their blood glucose measure that they can use to optimize, and they also have the long term measure of hba1c that they can use to communicate with their health care professionals as well.

T:                   Yeah, so that they are not so dependent on subjective.

S:                   Exactly, because in neurological diseases and also psychological and mental health there is very few objective measures. It’s a lot about perception and it’s difficult to have a useful discussion with health care if you don’t have a joint measure to talk about.

 Quantified self

T:                   we have covered most of your history, but just the last years are a bit mercy now. Is there anything that you can fill in about the last years? Are there any special moments there, like for example that you came up with the word ‘spetspatienter’ or that you started your doctorate, or something else that you think is important to tell us?

S:                   So, I attended my first Quantified Self conference in 2011 and Quantified Self is a community for self trackers. I didn’t know that there was a word to describe what I have been doing. Evaluating and measuring, not measuring as such objective matters but more like observing and evaluating like I do as an engineer. And I didn’t know there was a word for it, but I’ve always done it. Observing and noting in my calendar: “Okay, so this medication today on this time had this effect. What happens if I change the time, or what happens when I do this?” So, I took notes for years and years. So that conference and that community has really sort off become very important to me. I’ve been learning so much from that community. Most of the people from that community are not patients themselves, but they are just interested in optimizing their health.

T:                   So, they are like healthy people who want to get healthier?

S:                   Yes, optimize their training or optimize their diet.

T:                   Like sportspeople?

S:                   Yes, but we can use the same methods. We learn different things from how other people track different things. That community has been very important for me in my understanding of my own disease and how I can manage It and how I also can find ways to optimize my treatment.

T:                   So, what happened?

S:                   So, there have been so many steps in this, but in short it’s been sort off enriching my life and my research as well. So, I’ve implemented it. I’ve used the learnings in my research and I’ve also had some scientific articles published in this area.

T:                   Yeah that’s right, I actually saw a recent one!

S:                   Yes, on self-tracking

T:                   Yes, because I had to think about that because in that you used an objective

S:                   Yes, the finger tapping. So, since one of my main Parkinson’s symptoms is slowness of movement and the medication I take help with the speed of finger movements for instance. So, I’ve been using finger tapping, so how fast, how many taps can I do in a specific time.

T:                   As many taps as possible?

S:                   Yes, as many as possible. So, I’ve used that as a proxy for medication effect. And then I tracked myself over the course of a few days at different times. Ten or twelve times a day on different times and then I made graphs and also had noted down my medication timing. So, I can see them in the same graph. And that has been really helpful for me to find gaps where I am less mobile. And then been able to shift my medication to tweak it a bit so I have a more even effect of my medication over the course of a day.

T:                   That’s nice! But ten to twelve times a day, that’s a lot! I’ve actually, I’m using an app right now, I’m doing some sort of subjective self tracking at the moment because I’m seeing a new specialist in a few weeks and I want to be able to present my symptoms very clearly. But I want to actually do four times a day, to track my subjective symptoms, because the app that I use wants me too, and I already got annoyed after two weeks!

S:                   I know! I was only able to do this for two days straight. That was probably the most important learning from this, that it takes a lot of time. Even if I choose it myself, even if I do it for something that I know helps myself. It’s very difficult to motivate yourself to keep doing it. Because you don’t want to track for tracking’s sake. You want to track for purpose and if you feel well enough, you don’t want to track it necessarily, you just want to get on with your live.

T:                   Yeah and what I actually did: I tracked for ten days when I used a lesser dosage of a certain medication and now, I want to track ten days when I use my normal level of medication. But now I’m less motivated, because I’m doing better. So, when you’re sick, you can’t really do much anyway. And now I’m like: “Okay, but I could do other things”.

S:                   Now you’re well enough that you are able to do other things and you don’t want to lose time tracking, right.

T:                   Yeah, but it’s good to have a control

S:                   Yes, that’s the thing. It’s a balance.

T:                   I guess you also use your research skills to do this.

Riggare’s organization for spetspatienter (Dagens Patient)

T:                   So, we talked about how it often goes wrong and now what you do is you have doctor-centric communication with your doctors. But does it work? Do you get the outcomes that you need? Or is it still?

S:                   Hm, that’s… I don’t really know, do I? Because I don’t know what it would be when I didn’t do this.

T:                   Like, do they do the researches that you want to get?

S:                   No, I usually don’t ask them for that because I don’t… so what I do is, what I think the effect it has is that it saves time. It saves time for me, and it saves time for them, that I don’t challenge them if I think they can’t take it. What we lack, what’s missing in that is that there’s learning lost. Both for them and for me, I think.

T:                   Yeah, because if you would come up with your own theory, and they would actually take it seriously and listen, still they would think the theory is maybe bit right but also a bit wrong, that would be interesting for you as well. And now you may leave with this theory still in your head and you don’t know what’s missing.

S:                   Exactly.

T:                   So, do you think, I actually think that there’s a limit to, as a patient, we can make the situation optimal. We can only do so much.

S:                   I agree.

T:                   We need to change the culture. Otherwise it’s not going to happen.

S:                   I agree.

T:                   So, but you are actually working on doing that.

S:                   I’m trying, yeah, I’m trying to see how I can influence the system and the culture to change

T:                   So not only did you introduce this new word, but you also founded a new organization, right.

S:                   Yeah, a network I think we can call it. It’s not a formal organization yet, we’ll see where it will take us. But we have a network where we try to highlight and show good examples of patients that are improving health care in different ways. Not always with health care consent or collaborations but there are ways to navigate the system. We’re trying to do it, regardless of diagnosis. Because most organizations in Sweden are focused on a specific diagnosis or condition.

T:                   Like the traditional patient organizations. So, are you mainly trying to influence patients to develop better strategies? Or are you also going to try to change the system?

S:                   I think we’re trying to do both. We have support from the government, we have a governmental agency for innovative systems in Sweden and we have the project now that we have support from them with a large number of project partners. Together we try to find a way of collaborating. And among the partners we have traditional patient organizations, but we also have health care organizations and companies and also the regions and the councils.

T:                   So how do you plan to improve health care?

S:                   So, we’re trying to show health care, what can happen if you work in different things. We try to lead by example. So, we’re doing collaborative projects with all these partners and try to communicate, try to show these people what the benefits are basically.

T:                   It’s so cool. Actually, I don’t think that non-Swedish listeners will get so much out of it, because the website is in Swedish right?

S:                   Yes, but my personal blog is mostly in English.

T:                   Yes, that’s right.

S:                   I don’t write so much about this project there, but there are some posts in English that might interest people there.

Different ways to be a Spetspatient (Interlude by Tamar)

At this point in the interview, both Sara and I were extremely tired. There was however one thing left that I wanted to ask her about, and that’s the research she did with a team of other people on the different roles Spetspatienter can play. We decided that instead of pushing past our interview limits, I would just read to you about these roles. So that’s what I’ll do now.

So. Sara and her colleagues interviewed a bunch of Spetspatienter, or Lead Patients in English, to figure out which kind of different ways there are to be a Spetspatient. They came up with twelve roles that Spetspatienter play and I will read them to you here.

Different ways to be a spetspatient:

  1. The Activist: the activist works for changes in policies and practice, related to their health and health care needs.
  2. The Academic: this one stays updated on the latest scientific articles and evidence
  3. The Mentor: the mentor shares their knowledge and experiences to teach others.
  4. The Patient Researcher: the patient researcher uses scientific methods to investigate their health issues and/or partners with established academic researchers.
  5. The Selfcare Expert: the self-care expert does what they can to learn about their health and wellbeing and works to improve it.
  6. The Healthcare Partner: creates and manages partnerships with health care professionals.
  7. The Communicator: writes and/or speaks about their own health experiences in conferences and/or meetings, articles, meetings and social media.
  8. The Innovator: creates or has ideas on new solutions based on their health and health care needs
  9. The Hacker: addresses health issues through the use of technology
  10. The Entrepreneur: builds companies or organizations from their experiences with health or health care needs.
  11. The Tracker: the tracker self-monitors health issues
  12. The Healthcare Coordinator: this person manages and coordinates multiple health care contacts for their health care issues.

So, it’s quite a lot of them and I’m really curious in which you recognize yourself. I recognize myself in a lot of these different roles. For example, in this podcast, I am the communicator, I write or speak about my own health experiences. Although I also speak about other people’s health experiences. I think that I can also say that I’m an activist. I’m an academic. I have been a self-tracker and sometimes I think I’m a mentor and I’m definitely also a health care coordinator. So, let’s see, it would be really cool if you guys and gals and everyone in between could share in which roles you recognize yourselves. I will also link a picture of all these different roles on our social media accounts, so that you can look them up again.

The research paper that Sara and her colleagues wrote about this hasn’t been published yet, so this is really a special preview. I’m really glad I could offer you this.

Tamar:          Okay, so thank you so much! I’m so tired!

Sara:              Yeah, we need to rest now both you and I, I think.


Thank you all so much for listening to this second part of our two-piece series on Sara Riggare! I am so grateful that I had the chance to interview Sara because I am very fond of her ideas and think we can learn so much from her. And I hope that you too have gained a lot of knowledge and insight from this conversation.

Next episode, we will listen to a very special conversation I had with a person who has a genetic disease which among others causes kidney problems, but also made her turn deaf later in life. If you wondered if a deaf person can be on a podcast, well, this is certainly possible! There’s still a lot of editing to be done though, so it will probably take a while. Stay tuned though, it will definitely appear in you podcast feed one day! Also, Eline and I have been working on our plans to improve the podcast. After the next two episodes, we will present them to you. We can’t wait!

Thanks to Sara Riggare for this interview. This show was produced and edited by me, Tamar Doorduin. Eline Pollaert assists me in making the show. Josanne Ruitenberg transcribed the show to make it accessible to people with a hearing disability.