Expertise of patients explored in research project

​People living with chronic illness are often responsible for a large portion of their own care in their daily life. This makes them experts on how to live with the disease – a role that should be used to reshape the health care system. And patients can now contribute!
​Chalmers initiates a two-year research project focusing on the patient as an innovator. It is well-known that people living with chronic diseases or long-term conditions, learn how to live with and adapt to their illness. They are forced to learn about complex disease profiles and be diligent when observing symptoms, how they respond to treatment, and learn what it takes to improve quality of life. This experience can lead to innovations, and this group of patients – and their relatives – are an untapped source of knowledge and innovation.

Supporting the patient in taking initiative

This is a research project that takes a totally new perspective, according to Andreas Hellström, research leader at Chalmers.
 
“It has become more common to involve patients when developing processes and services in health care, but this project takes it one step further. We support the patients in taking initiative and taking the lead in the innovation process, which allows for completely new ideas and solutions. This is an area ripe for innovation, just waiting to be used”, says Andreas Hellström.
 
For the patients to get the right conditions to drive innovation with a focus on how to live with chronic illness, there has to be the right structures in places in society, that are open for new ideas. This is exactly what this research project aims to study.
 
“In this project we’re going to develop and evaluate strategies, tools and models to allow for citizens and patients to successfully act as innovators. We are going to document what has to be in place on a structural level to create the right conditions for innovations.”

Researcher and living with a disease

Sara Riggare has Parkinson’s disease, and is part of the project management team. She meets her neurologist twice per year, the rest of the time she is her own primary care giver. Sara Riggare is also a PhD student at Uppsala University and has – among other things – developed a method for monitoring of medication. She is a well-known and outspoken patient advocate, not just in Sweden but also internationally, for enabling patients to contribute to innovations for a healthier life.
 
“Today, there is nowhere to turn to if you want to develop new ideas, and because of this a large portion of patient knowledge is lost. The doctor doesn’t have all the information, and neither does the patient. I would wish for the cooperation between the patient and the health care providers to be more equal”, she says.
 
Health care has a lot to gain from knowledge originating from people’s experiences of living with chronic illness – that is, a holistic view that includes health, everyday life and self-care.
 
“The health care providers also have a role to play in this, it is not just about self-care and everyday life. We will also look for project participants who have ideas about what healthcare could do differently”, says Andreas Hellström.

Sharing experiences and learning together

The research project is based on so-called learning by doing. Patients or relatives will be invited to share their own experiences of trying to innovate in their health and selfcare. Together with researchers and innovation coaches they will develop and test strategies for innovation. The researchers will follow each step of the process and explore conditions necessary for good ideas to be tested and utilised.
 

Would you like to participate in this project? Read more here.
You are also welcome to send an email to Andreas Hellström.
 
The research project Patienten som innovationsledare i välfärdssystemet is funded by Vinnova and run in collaboration between Centre for Healthcare Improvement at Chalmers, Västra Götalandsregionen, the organization Forum Spetspatient, Kraftens hus, Coinnovate and C.S. Combined Services AB.
 

Text: Malin Ulfvarson
Photos: Carolina Pires Bertuol (Andreas Hellström), Christopher Kern (Sara Riggare)

Published: Tue 30 Jun 2020.