“Sara Riggare is an engineer by training. She experienced her first symptoms of Parkinson’s disease around 1984, at 13, but wasn’t diagnosed until nearly 20 years later. In 2010 she decided to combine her patient experiences with her engineering skills to try to improve things for herself and others with chronic diseases so she started studying at a masters programme in health informatics at the Karolinska Institute in Stockholm, Sweden. Sara is currently a doctoral student at Karolinska and the topic of her research is “Personal observations as a tool for improvement in chronic disease”. She is an actively engaged patient with a vast network across the chronic disease community and blogs at www.riggare.se.” (source: BMJ)
The following has been paraphrased from an interview with Sara Riggare on May 17th, 2018.
(Click above for the full audio version or here for a downloadable link)
How do you think your training as an engineer prepared you to tackle a problem like Parkinson’s disease?
I think it has been essential because I don’t think I would have the mindset that I have without it. Engineering is about analyzing a problem and trying different solutions to see what works, which is very similar to how one should deal with Parkinson’s.
Was there a tipping point when you realized you had to devote yourself full time to your own self-care?
I would say that there have been plenty of tipping points in which I realized that if I did not devote myself to learning how to deal with it I would have been a lot worse off today. So it was more in retrospect, seeing what I have achieved by the effort that I made rather than seeing the path that I need to go.
What do you think would surprise most people if they were to continuously track their own health?
It’s not so easy to track health or illness over any length of time, and Parkinson’s is especially hard because we don’t really have any clear measures of it. Sometimes I have diabetes envy in that they have clear measures for their current state, their blood-glucose levels, as well as the HBA1c test as a measure of their long-term progression. Of course, having type 1 diabetes isn’t easy either, but they have clear measures that they can use to optimize things. In Parkinson’s a lot of the work is just in deciding what to measure. I think it would surprise people to learn how difficult it is to measure, but I also think that people who take the effort to do the work would be surprised at how much they can improve if they do.
Could you explain N-of-1 studies and do you believe they can be broadly applied to a population of people?
N-of-1 is a broad concept that means doing studies using the scientific method and with scientific rigor, but only on one person at a time. In medicine, case studies are one type of N-of-1, but those are usually done retrospectively when an outcome is surprising, whereas N-of-1 are deliberately planned. Any kind of self-tracking experiment is an N-of-1 study to some degree.
When you develop a treatment or drug, you start off with some idea of what might work, then you try it on a small group and measure certain targets in what is called a feasibility study. Then these scale up into the phase 1, 2, and 3 studies used in drug development. But, afterwards, if it is successful, individuals get prescribed the treatment, at that point they are essentially conducting an N-of-1 study, it is just not being followed up. If we can find some way to follow up on those, a sort of phase 4 study that tracks how drugs are actually used and their effects, that would be new knowledge that could be useful to patients and clinicians.
Could you explain your skepticism regarding medical sciences ability to solve a problem like Parkinson’s?
We all know that this is a very complex disease and that it is also very individual in terms of symptoms and what treatments are needed for it to be controlled in the best way. Looking at how drugs are developed in the current paradigm, where we only test therapies on large groups, it is hard to see how that could be helpful in a disease such as PD that is so individual. Perhaps with better subtyping we can move closer to solving it, but looking at how trials are conducted today it is unlikely that we are going to get to the point any time soon where people are subtyped well enough to be able to say if they should be expected to respond to a certain treatment or not. I think insights into just how complex PD really is increasing, and I can safely say that the current system is not fit to deal with all of that complexity.
Would you recommend then that all patients adopt some kind of self-care strategy?
Yes, I didn’t know this when I went into this, it is something that I realized over time spent devoting myself to studying Parkinson’s and understanding just how incredibly complex it is and how many interactions there are between stress and sleep and medication and hydration and on and on.
Which areas of research do you believe deserve more funding?
I think the area of care deserves more funding, of course we all want a cure, but for those diagnosed who likely won’t benefit from a cure being developed today, we also need to develop therapies to keep them as well as possible for as long as possible. We should complement any funding for a cure with funding for care and wellness and how to optimize existing treatments.
What role do you think doctors should play in healthcare?
I think they have a significant and important role to play in healthcare, but I do think that role needs to change from being seen as the overarching know-it-all expert to a coach who works in collaboration with their patients to optimize individual treatments.
What do you think a visit to a doctor should look like?
I think a trip to the doctor should be preceded by some sort of data exchange prior to the visit, some kind of measurement or observation that I can do at home. I think we should also have a chance to decide beforehand what we want to talk about at the visit and what the main issues are. It should also include a serious and mutual discussion on current research and what to expect in the next year or five years.
What would your ideal healthcare system look like?
Since a growing number of people are dealing with multiple conditions that require multiple treatments and multiple doctors, the system needs to change accordingly. We should enable more patient input into the system at all levels, both in the actual doctor visits, but also in developments towards improving healthcare and research.