Interview: Sara Riggare, chronic disease expert, on self-care

Sara Riggare experienced her first symptoms of Parkinson’s disease at 13-years old and her extensive self-monitoring experience is the basis of her research.

Sara Riggare is a PhD student in Selfcare for Parkinson’s disease at Health Informatics Centre, Karolinska Institute in Stockholm. She experienced her first symptoms of Parkinson’s disease at 13-years old and her extensive self-monitoring experience is the basis of her research.

What do you think is the biggest overall threat to health systems in the next five to 10 years?

The obvious one, of course, is the aging population and increase in chronic disease. If we look at developed countries we should add healthcare systems’ reluctance to change. At the moment, the way we deliver healthcare is tailored to acute care, not chronic care. So reluctance of healthcare providers to adapt to a model that accommodates aging populations and chronic disease is definitely a challenge too.

Why do you think there is reluctance to change?

Because the changes are significant – it would mean a fundamental transformation in the way healthcare is organized, managed and delivered. Healthcare systems are based on an outdated model of knowledge transfer – it is one-way: from healthcare professional to patient, but not the other way around. The regulations and the rules in terms of knowledge transfer are outdated. We live in a digital era where knowledge transfer is much more universal and mobile, and where pen and paper is outdated. There are pockets of progress in several healthcare systems around the world, but I haven’t seen system-wide adoption yet, unfortunately.

Do you think that the necessary changes will be patient-driven or does it need to start with a regulatory shakeup?

I think the patient movement has started, and it’s growing, but sooner or later the regulatory and policy makers have to make the necessary changes for the system to reach fruition.

In terms of technology in healthcare, the shift that everyone is talking about is how healthcare needs to move into people’s homes. For this to happen, the technology needs to be designed differently. If we want people to be able to take care of themselves, we must equip them with technology that is designed for them as primary users. We need healthcare systems to support that transition, as well as a reimbursement systems to support it.

I think that one of the biggest opportunities in healthcare, if done correctly, would be to invest in the development of self-care models. Prevention – stopping people from becoming ill in the first place – is an area where spending can be reallocated or used in a more efficient and effective way. For example, motivating people who have a chronic disease to lead a healthier lifestyle.

Should healthcare focus more towards the home?

I definitely think so, but it would require a complete shift in power between healthcare providers and patients, which is the biggest barrier to the transition.

Take diabetes for instance. In the 70s when insulin became available it was the start of a very empowering process for people with diabetes.  Healthcare providers had a treatment that was effective for patients, but due to the frequency of treatment, healthcare systems were forced to relinquish control and empower diabetes patients to care for themselves.

How close do you think health organizations are to measuring their performance and patient progress, and empowering patients with that information?

Very far away I would say, unfortunately. As far as I can tell, there are only pockets of change instigated by healthcare systems. However, the area of rare diseases is ahead of the pack, primarily driven by the insistence of patients and their families – the cystic fibrosis community is an example of this.

Diabetes has an objective and comprehensible measure that is easy to capture for both current state and progression of the disease, so many patients insist on access to that information to better understand their condition. Many other diseases lack similar measures and objective evaluation. For instance, almost all neurological or brain disorders – like Parkinson’s disease for example – don’t have an objective and easy to measure value data point that patients can use as leverage. I think this is a reason for the lack of patient participation in neurological diseases, and other diseases as well.

The more concrete and measurable data that you can track that’s linked to a certain disease, the more opportunity there is for patients to be empowered by that knowledge.

What does value mean to you in the context of health systems?

For me personally, value is not having to spend more time in healthcare than I absolutely need by staying as healthy as I can.

Value in healthcare is sort of a secret that everybody talks about, but it seems no one has cracked the code just yet.

In Sweden, the concept of value-based healthcare is all the rage at the moment. Michael Porter’s value-based healthcare is a theoretical model of how value in healthcare can be created, and it’s being implemented in several instances in Sweden. In the original model, value is based on outcomes that matter to patients over resources used, and outcomes should be defined by patients based on what is most important to them. However, in practice, that’s rarely the case. Instead, healthcare organizations define values on behalf of patients. Both ways have their pros and cons.

Is there a way of “resetting” healthcare delivery, but also maintaining the health and treatment for people that are currently in that system?

That is really the big challenge. Patients need both continuous improvement of the current system as well as, in parallel, the development of a new system. Most of that change has to happen at a policy level, because the regulations have to change to allow transformation. It will take some very brave and knowledgeable politicians to drive that.


Sara Riggare

About the author

Sara Riggare

Sara Riggare is a PhD student in Self-care for Parkinson’s disease at Health Informatics Centre, Karolinska Institute in Stockholm. She experienced her first symptoms of Parkinson’s disease at 13-years old and her extensive self-monitoring experience is the basis of her research. An engineer by training, Sara decided that she wanted to combine her engineering skills with her patient experiences to try to improve the situation for herself and others with chronic diseases. Sara’s work is dedicated to patient empowerment and digital selfcare tools for chronic conditions. She is a member of the BMJ patient partnership advisory group, ambassador to the World Parkinson Congress 2016, advisor to The Swedish Medical Products agency, and advisor to The Swedish Agency for Health and Care.


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