Health data - owning your own reality

Health data - owning your own reality

Hanna Svensson has written the “Health data from an individual and self-care perspective” report. This document examines how people with chronic diagnoses such as rheumatoid arthritis log their health data, much in the way the Elsa app works. She believes that the holistic perspective this health data can provide could lead to better healthcare and better patient outcomes.

Who are you?

My name is Hanna Svensson, I have a degree in technical physics and I have been working for a couple of weeks now on quality measurement at Rise. Previously I worked as a consultant in development. My objective when speaking and writing in the healthcare sector is to highlight the patient perspective. I also give lectures and run workshops on data in healthcare, self-care and patient co-creation. I have about 30 years of experience in type 1 diabetes and two years of experience in rheumatoid arthritis (RA).

I have been living with type 1 diabetes since I was very small. I started measuring my blood sugar once or twice a day, but now I measure it 240 times a day. Taking my own measurements in everyday life has always been important to me. For three years now I have also been living with Rheumatoid Arthritis (RA).

I have always been interested in technology and mathematics, and have researched how things work in society. I trained as an engineer in technical physics and have worked in many different areas. Since I had been collecting my own data for so long, I wanted to explore the concept of health data. How could it work for people with conditions where things are not as easy to measure as a diabetic? Since I developed RA, it has become an even more important issue for me, so I decided to dig deeper into health data. 

What is health data?

Health data is information that relates to the health of a person or a group of people. It can include personal measurements and estimates, but also external data such as weather. Examples of a value could include your blood pressure or body temperature, and examples of an estimate could include how tired or stiff you feel.

A majority of people who collect their health data do so to try to achieve a healthier lifestyle or prevent unwanted health conditions. People who collect their health data are generally health-conscious and want to improve their quality of life in different ways.

Report on health data

Hanna Svensson’s report aims to increase the profile of health data and shed light on self-collected health data from an individual perspective. It describes what self-collected health data is, and how it can be structured. The focus is on people with long-term or chronic conditions. 

The study examined a number of articles on self-care and health care. The articles on self-care describe the importance of measuring and logging the factors that are important to the individual, and the usefulness of this data during meetings with healthcare professionals. Having data to hand helps both people with chronic conditions and their healthcare professionals to see the relationship between symptoms, side effects, treatment and lifestyle. There were also disadvantages, including the difficulty of analyzing data and the time-consuming logging process. 

Nine people have been interviewed about what self-collected health data means to them and the different variables they log. The study identified 72 different variables within self-collected health data.

The survey was answered by 188 people, about half of whom had one or more chronic diseases. More than half collected health data about themselves daily or several times a day. Among those who had received a chronic diagnosis, about a third said they collected data to supplement the health care they receive.

What insights did the report give?

What I found exciting was that some people had come up with their own test procedures to estimate different things. They want to make things more quantifiable and find clearer ways of seeing that symptoms or flare-ups were on their way.

The big problem is how to record, save and store your health data. It’s hard work, and that means it’s difficult to do properly. They used different mobile apps, activity meters and other types of digital tools. Elsa is an alternative that really helps people collect their RA data in one place.

Why is it good to have your own health data?

Firstly, to make your annual visit to the doctor easier when they ask you ‘how are you feeling?’. It is a complex question, you don’t always remember, and the answer varies over time. It is simply difficult to summarize in a few sentences. If I have saved information I can show them about my symptoms, my measurements and things like how tired I felt or how much pain I was in, I can see the patterns clearly and it’s easier to answer that question.

Personally, I think it is interesting and fun to analyze data. It’s a new perspective on my "involuntary hobby". I know it’s not so much fun for everyone, but it can still create a feeling of having more control than I think most people like. I like being able to see in black and white that I experienced something, that I can look back in time and draw my own conclusions. I can own my reality a little more.

What are you interested in measuring yourself?

In terms of my own illness, I am most interested in how my RA affects my diabetes. There is not much research on how these diseases affect each other, and my doctors and other healthcare professionals usually refer me to each other. These are two common diseases and many people have both at the same time. But despite all that, there is no knowledge. 

I think that when you focus on individual diagnoses, you end up going down certain well-trodden paths of thinking that treat each condition as separate. But that's not how we are as human beings: we are whole people. I think we need to look at what variables people with RA are looking at, but to get really good benefits you may need to look at other groups to find the connections.

What do you imagine health data being used for in the future?

I own my health data. It gives me better control and understanding of my illness and increases my awareness of it. I believe that using the overall perspective on health and feelings will become more common in the future, instead of simply focusing on curing symptoms. I see that both private and common health data will be part of the shift to a holistic perspective, and that it will help many find ways to feel better.