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Foto:Christopher Kern

Interview with Sara Riggare

Hi Sara.
First, I’d like to congratulate you on being named Resource of the Year. This is the first time a patient has received this award.
How do you think this can benefit the healthcare system and other patients?

I hope that it is the start to a new view on patients. That it can lead to a more nuanced view, and that patients are not always viewed as having a passive need for help and being incapable of doing things for themselves.

You were diagnosed with Parkinson’s disease not long after you became a mother. How did you process it?

I knew since I was a teenager that something was wrong, but as a new mother almost 14-15 years ago I realized it was Parkinson’s, and that changed everything. I had to take care of my daughter, so I could not get bogged down in it. I’m not recommending this as a solution for everyone, but it helped me look past my own situation and see something bigger.

What do you think was missing from the care when you received the diagnosis?

There was no support from anyone who knew what it was like to live with it, and there was no understanding for the patient’s situation.

What has changed about the care during your time as a patient?

There is at least an insight that the overall picture is not complete, so that is a start. But now we must make an effort to fill in what is missing. There is no concrete plan today, only sporadic efforts.

In Sweden, are we good at putting the focus on the patient? Or is this just something we say?
I think many people believe they are focusing on the patient, but that they might not get it right every time. This approach is talked about a lot, but many people don't know how to realize it from a purely practical point of view.

You have said that the patient knows more than the doctor. Is such a statement considered controversial?
Yes, you could say that. I have also received a lot of positive feedback, so I can't say it has all been negative, but there are still enough people who think that the comment is startling for it to be a problem in general.

Don’t you think that many people start to self-medicate and improperly choose their own dosages when using self-care tools like apps?
This is the fear that health care officials often have, but patients are often very careful withself-preservation activities. We patients are the only ones who really can have the full picture, so there is so much to win from working together The belief that self-medication should be forbidden – and making it more difficult for the patient to self-medicate – is absurd; it must be a cooperation based on trust. There are risks, of course, but we must take them on with knowledge, not prohibition.

Transferring information to an export interface that becomes available digitally. How secure do you think this is, and what is needed for us to feel certain that the information will not end up in the wrong hands?
Right now we do not have a good solution, but this isn’t due to a lack of technology; rather, we’re not using the technology properly. I think in the future we will use different solutions that are already here, e.g. Block Chain, which could be really exciting to use, for example with health data. But it will be a while before we can apply this technology in health care, unfortunately.

How do you view the future?
I think it is necessary to be positive about the future, because the option otherwise is to give up, but I try to get the future to arrive just a little bit faster. I’m definitely optimistic about the future; there are a lot of exciting things to look forward to.