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Future research methods can benefit from the use of apps that include the patients´ perspectives on their own health

Johan Sundström. Photo

Professor Johan Sundström has contributed to the development of new apps which makes it possible to extract research data from patients´ perspectives on their own health and allows electronic informed consent.

Johan Sundström is a professor of epidemiology at Uppsala University and executive board member of Epihealth. In addition to his research activities, Johan works part-time as a clinical cardiologist. SRA EpiHealth is interested in knowing how the apps can benefit patient-centered care and improve future research methods.
Johan explains, - We have developed two systems that can benefit patient-centered care and improve future research methods. One is a system for digital management of informed consent, “eIC”. The other is the patient-centered app “Symptoms” which is a kind of diary that allows patients to contribute to research and health care by continuously gathering data about their symptoms, functions, and quality of life. It also allows them to choose if they want to share their data with healthcare, research studies, cohorts, and registers. At the moment, we are using data to better understand adverse effects after COVID-19 vaccinations.
He continues, - These apps help us contribute to patient-centered care and will make it possible to see connections between early symptoms and later illnesses. This will also make it easier to measure the quality of healthcare and evaluate if health costs lead to increased value for patients. For researchers, these new digital tools allow us to use new methods to gather data more efficiently and help us design research studies to include patient-centered symptom registrations. We do not register symptoms in healthcare today in a systematic way, and one doctor´s interpretations of a patient’s symptoms will not always align with the interpretation of other doctors. We need to systemize the symptoms to fully understand them. 
We continue the interview by asking Johan how the app eIC works and how data security is maintained in connection with electronic informed consent. - The purpose of the eIC system is to allow electronic collection of informed consents prior to participation in a clinical drug trial. The system utilizes BankID for the research participant. The researcher uses a SITHS-card that is a recognized method for login to national care systems. The SITHS-card is connected to HSAID which is a health care administrative ID. A high level of data security is maintained and the eIC can be utilized by different research projects. It also enables inclusion in clinical trials via a video conference.
During the interview we also discuss the app Symptoms and how the patients´ diaries can be used to extract data. Johan explains, - The app works like a diary that helps patients help themselves. It is the intention to help patients gain a better understanding of their own symptoms and how they can be improved. It also helps the doctor make correct medical assessments of a patient´s health status in multifaceted situations. The app gives doctors a quick overview of the patient´s health status which is illustrated with graphs, diagrams and texts.

Symptoms. Illustration

Johan continues, - Furthermore, the app can be useful in the precision medicine strategy of n-of-1 trials that investigate the effects of different treatments in an individual patient. The app was available to patients in the Precision Hypertension Care (PHYSIC) trial aiming to investigate the potential for precision medicine in hypertension; the results of that trial are currently being analyzed and will soon be published.   
SRA EpiHealth is interested in knowing if it is possible to use eIC with the app Symptoms or combine it with other research methods to extract important research data. - With eIC as a backbone we are currently investigating other novel research methodologies such as home-based self-administered capillary blood and urine sampling, that are sent to investigators by study participants in pre-paid envelopes, analyzed at a core laboratory certified for dried blood spot analyses, and with results reported back to the participant on a web study portal. This will open up new possibilities for large-scale cost-effective clinical studies, says Johan.

For further information about the apps, please click on the links below:

Current research projects that use eIC: