The Swedish Fibromyalgia Association
There are limited options available for rehabilitation for fibromyalgia patients in Sweden. A lucky few get multidisciplinary treatment at specialized pain clinics but what is available varies drastically depending on where in the country you live. Caregivers knowledge about the disease varies and it is unfortunately common to be met with distrust and ignorance.
An internet search to gain knowledge about the diagnosis gets a lot of hits but it is not easy to know which sources to trust. How do you sort all that information?
The Swedish Fibromyalgia association has, after an extensive application process, received a grant from Allmäna Arvsfonden to create a digital health platform with the purpose to promote self- care and symptom management for people with fibromyalgia-symptoms.
The planning process started in 2016 with questionnaires and group interviews to find out what content the prospective users wanted in the platform. We formulated our project-goals based on our market analysis and built the platform from scratch with the help of web-developers.
In fibromyalgia, research has identified certain lifestyle factors that strongly correlate to physical and mental wellbeing. Our platform-modules reflect that: Fibromyalgia, Pain, Sleep, diet, Physical activity and Stress. We have a section dedicated to relationships and one to the coaching process. Each module consists of theoretical background and facts, tips and tools for symptom management, lectures, films, training programmes and podcasts and a digital diary for tracking progress.
The platform also offers digital questionnaires based on valid instruments and we have a personal section where you set and follow your own goals, logs where you see how your daily wellbeing is affected by stress, sleep and physical activity and a discussion forum for members.
Members can choose to work independently with the platform or have regular phone contact with a health coach. This service has been much appreciated.
Thanks to the grant, registration and coach contact are free of charge and we are presently looking into funding options to keep it this way after the initial project period.
With Fibromyalgiportalen.se, we offer tools for symptom management and self-care that is available regardless of your financial status or location, thus contributes to equality of care. Users take charge of their own rehabilitation and get the information they need to do so with the optional support of a knowledgeable coach. It promotes self-efficacy and patient empowerment.
The platform contains all that is relevant in the field of fibromyalgia and presents it in an easily digested format. It gives members a sense of community where you are seen and respected. Everything is meant to make you understand and accept your diagnosis. We have focused on what you can do, not the limitations you experience.
Goal setting and visual feedback are central concepts in Fibromyalgiportalen.se to motivate and stimulate healthy lifestyle changes.
The platform is under development and we are continuously looking for ways to improve both content and functions. We have deliberately not marketed it yet and let the membership numbers grow organically. The response so far has been very positive both from end users and healthcare professionals.
Fibromyalgiportalen.se is not meant to compete with the traditional health care system but to be a compliment. We make it clear that our concept is not a treatment protocol but rather a smorgasbord of options to encourage you to take charge of your own health.
The next step is to connect the Fibromyalgiportalen.se to an app to make it easier to use logbooks, diaries and to stay connected. This should be ready to launch early January -19.
Our motto in Fibromyalgiportalen.se is “You are not alone”.
We are excited and proud of what we have built so far and feel that other patient associations can benefit from something similar. We would like to invite other organisations to discuss possible ways of collaborating.