Support for your self-care
Reumatikerförbundet, the Swedish Rheumatics Association, is the country’s largest patient organization. Chairman Lotta Håkansson believes that Elsa provides an exciting opportunity for many members to chart how they feel and take power over their illness.
Who are you?
My name is Lotta Håkansson and I have been chairman of the Rheumatic Society for two and a half years. Time goes fast when you’re having fun! I myself have no diagnosis - or not yet, as I usually say. I was a politician for many years, so can benefit from those experiences.
It felt like an exciting challenge to become chairman. Ours is a large organization with many members, which means there is weight behind what we say. I see my job as a challenge and opportunity to show what is happening.
What is the Reumatikerförbundet, the Swedish Rheumatics Association?
We are Sweden's largest patient organization. We are a member-controlled organization and it is very important to us that we have many members. But our mission is bigger than that. We work not only for our members, but also for those who have not yet discovered us. There are between one and one and a half million people in Sweden who have one of the various rheumatic diseases that we cover. It is a very big mission.
Research is one of the most important things we do. I think we should be extremely proud of it. We work closely with researchers and distribute large research grants every year. In recent years, we have distributed SEK 20 million annually. This means that, after the state, we allocate the most money to research into rheumatic diseases.
What is your task at the Swedish Rheumatics Association?
As chairman, my main task is to lead the Federation’s Board and ensure that we, as a board, sit in the driver's seat and lead our organization forward. I have taken on the task of trying to be very outgoing and to be involved in many different contexts. It is about being visible in our organization but above all by telling others that we exist. It is about finding different arenas, getting to know different parts of the medical professions and showing that we are relevant partners for politicians and other decision-makers. This is how we can be part of influencing how healthcare is developed.
Personally, it has been fascinating as well as useful to learn about the various diseases and to talk to people about how they experience different diagnoses. It can be about what you encounter in the community, such as with health care, insurance funds and employers. There's more to do, that's for sure!
Why does the Swedish Rheumatics Association want to cooperate with Elsa?
I came across Elsa for the first time during the Almedals week, which is where Sweden’s politicians, policymakers and associations come together. The idea already existed and work had begun. I thought it sounded exciting, especially to give people the opportunity to track themselves. Although many different apps are being developed, it felt like Elsa was something we could be part of, and that many of our members would benefit from our involvement.
We want people who have a chronic illness to feel they have power over their illness. Elsa could give them an opportunity to track themselves. It is an opportunity to be more involved in everything that happens around their diagnosis, wich means our members can take ownership of themselves and put themselves in the driver's seat.
How would you describe Elsa?
Elsa is a great way to help yourself feel better and be able to follow your feelings. It can be used by anyone with a phone that uses apps. The most important thing is that it is simple!
One thing that struck me when we were involved in conversations around Elsa is that you soon forget how you felt just a few weeks ago. It’s easier when you can track yourself and see your own patterns of how you were feeling, what you did, what medication you took, whether you were fatigued, and so on. The history no one else can know is so easy to forget. It is also based on making these things visible. You get motivated (and sometimes embarrassed!) when you can compare it with previous weeks.
What does self-care mean to you?
Self-care is about being able to take responsibility for myself and my own feelings. But I may need some help, and Elsa can be a way to get that help. Self-care should not be instead of, but in addition to, care. An example might be exercising according to ability. It doesn't have to be about marathon running, but you should challenge yourself just enough.
How do you think Elsa could support this?
By being able to follow one's own feelings and experiences, you automatically create a mapping where you can more clearly see patterns and reflect on them. You can see more clearly why you feel bad about some things and good about others.
What is the digitalization of healthcare?
Digitizing for me means simplification and increased accessibility, and not smacking things more complicated. For those who have the opportunity and need, we must make things easier. In so many other situations outside of healthcare, we are getting used to using digital services. When did you last go into your bank branch? I personally book most things through an app, when I go out to eat at a restaurant, order tickets or scan airplane or train tickets. But many people are still doubtful when it comes to health care, for example booking a doctor´s appointment. Why, really?
There are some who have not got there yet for understandable reasons, though I do see 85-year-olds with smartphones asking their grandchildren for help. It is important to think about people who will not be able to make use of the possibilities of digitization. But that group is getting smaller.
For us in the Swedish Rheumatics Association, it is also important to see what we can do to create new ways to be active in our organization. Digital solutions could be interesting here too!