Endometriosis - a lot of menstrual pain is not OK!

Endometriosis is a common disease. The most common symptom is usually severe menstrual pain, but you may also have intestinal and urinary problems and pain during intercourse. Today, knowledge about endometriosis is generally low and too few patients are referred to specialists. This can lead to patients having to wait a long time for diagnosis and treatment.

(Source: The Swedish National Board of Health and Welfare - Assignment request for needs analysis and design of service / support for implementation of guidelines on endometriosis, 12/12/2017)

The assignment: How can we discover endometriosis at an earlier stage?

During the time of the work, the Swedish National Board of Health and Welfare was developing national guidelines aimed at decision-makers about endometriosis care. The guideline work is part of the government's investment in childbirth and women's health, which was initiated at the end of 2015.

We were asked to investigate how endometriosis could be spotted at an earlier stage and to make recommendations on how to increase knowledge sharing around the subject. This was a broad assignment so we worked in partnership with the specialists at the Swedish National Board of Health and Welfare to define the study.  

The study purpose:

To investigate which target groups are central to early discovery and to identify support that may be needed to improve knowledge and discovery of endometriosis.

Service Design and UX research as method

To gather insights we interviewed focus groups made up of healthcare professionals and specialist doctors as well as a target group of school age girls from, 12-18 years. We reviewed industry research and based on our insights, created a 'disease journey map' to show the target groups' experiences regarding menstruation and endometriosis symptoms.

We created a visualisation of the contact points they had with school health, youth clinics and the health centres and were also able to highlight the challenges and opportunities that exist around the early discovery of endometriosis.

We worked with storytelling to create a story about endometriosis patient 'Lisa' - and her journey from her first symptoms until diagnosis seven years later. Based on our analysis, we were able to provide solutions and recommendations for both professional and public support initiatives.

Based on the study, we came up with the following insights that we included in our recommendations on support.

1. Normalisation of pain. Young girls do not know what is ok when it comes to menstrual pain. Having menstrual cramps is seen by both relatives and the health care system as normal. The treatment process for young girls with a lot of menstrual pain is also not good enough. They are not always taken seriously when seeking care.
2. There is very little knowledge of what endometriosis is in the public.
3. There is uncertainty among care givers and patients about how to help and how to get help

Our recommendation

Our recommendation was to create an information campaign aimed at young girls and to create educational materials for school health, youth centres and health centres. This would be in conjunction with the release of the national guidelines in March 2018. The educational campaign would include videos and adverts on social media as well as a website (landing page) with information about endometriosis.

Campaign Brief

Based on the pre-study, Valtech created a campaign concept and brief that formed the basis of all campaign materials including campaign profiles, copy (tone-of-voice) and key messaging. We worked alongside the National Board of Health to produce the campaign materials for a March launch; the month of endometriosis. The campaign message - "A lot of menstrual pain is not ok" -highlighted our insights on the normalisation of menstrual pain and sought to create recognition and capture the attention of the target group.

We presented our findings during the study and received positive responses from both the National Board of Health as well as healthcare specialists. The report and recommendations from the pre-study will now be used for the creation of ongoing materials and campaigns to support the early identification and greater awareness of endometriosis.