Vea

A transition & management tool for people living with endometriosis for improved quality of life.

Context

Umeå Institute of Design, Degree Project - 4 months • 2018

Research & Concept

Role

Individual project - Research, Workshops, Co-creation, Probing, Concept

What is endometriosis?

Endometriosis is a condition in which an endometrium-like type of tissue grows outside of the uterus - this condition is experienced by 10% of people with the uterus.
Symptoms may vary and can include painful menstruation, pain at ovulation, painful sexual intercourse, abnormal bleeding, chronic pelvic pain, fatigue, and infertility. Endometriosis is sometimes labeled ‘the missed disease’ with the delay in diagnosis ranging from 5 to 8.9 years. There is no cure for endometriosis, but lifestyle changes can alleviate some of the symptoms but outcomes are highly individual.

Including patients in decision-making

We see a shift in the medicine from treating patients as a body that needs to be fixed toward encouraging patients to be part of the decision-making process and active in their recovery, along with a more holistic perspective on the care. Also, the well-being of patients is more and more prominent in the discussion about chronic conditions, that might not necessarily need aggressive treatment at all times, but rather management and monitoring. Contrasting new trends with the current situation could yield interesting insight into new directions.

Introducing changes

Out of 83 patients, only one hasn’t made any adjustments to improve their quality of life. 70% or more said that they adjusted medications, physical activity, diet, and social life. At the same time, 60% or more said that they adjusted Intimate relationships and/or sleep.

Tracking condition

50% of participants said that they are not tracking their condition. Survey also showed that the ones who do track their condition usually use multiple tracking/planning methods and the biggest complaint is that information is scattered, cannot be easily accessed by the doctor and tools are not allowing users to record data precisely.

Management & loved ones

More than half of the patients think that management of the condition is one of the most challenging aspects of their life with a chronic condition but from the survey for partners, we learned that only 6 out of 20 loved ones support them in this area.

Pre-diagnosis

“They all told me it was all in my head”

Pain Points: symptoms and complaints - doctors visits resulting in no diagnosis or wrong diagnosis

Problems & challenges: being dismissed, family normalizing pain since it is a common female experience, looking for validation

Other events: visit resulting in referral or suspicion of endometriosis and referral for further tests

Diagnosis loop

"I was given a yellow post-it note that I had endometriosis and the rest I had to google"

Pain Points: understanding disease, Finding the right specialist, Decisions on the treatment

Problems & challenges: being dismissed, finding motivation, need for education, fertility

Other events: tests, exams, visits, confirmed diagnosis

Living with a chronic condition

"More than the pain itself, I have a problem with the anxiety of pain. Because I don't know when the pain will come.”

Pain Points: changing goals, Infertility issues

Problems & challenges:  questioning if this is being lazy, fear of pain, medication management, access to specialists

Other  events: bad days, flare-ups, changes, non-medical interventions, non-scheduled hospital intervention following OBY-GYN or ER visit, non-scheduled change of treatment following tests or OBY-GYN visit, scheduled hospital intervention, follow-ups, appointements, tests

Future Planning

"No one ever mentioned fertility to me and that it might be a problem and maybe I should try to have children early"

Pain Points: planning future, Infertility issues

Problems & challenges: motivation, loss of the plans for the future that are not possible anymore, planning for the unknown (not knowing what will be the progression of the condition)

Management of the condition

Symptoms tracking, contact with specialists, motivation, measuring progress, celebrating progress, and finding supporting networks for bad days.

Advanced personalization & empowerment

Adjustment, holistic approach, body & spirit, following one’s needs and goals, realistic expectations, education, informed decisions, becoming part of the decision-making process, proactive role, getting to know stories of other women.

Support & understanding

Community focused on positive elements and understanding, groups undergoing the same experience, and education for the loved ones.

Co-creation

Goals

In two co-creation sessions, participants (patients and partners) evaluated big blocks of patients’ journeys mapped in the previous phase and adjusted those blocks to reflect their experience. Together we've mapped pain points and workarounds mostly focusing on the transition, management, and changes on top of the patient journey. Each of those areas was a starting point for ideation facilitated by "What if" questions - alternative scenarios, ideas for solutions, and reflecting how they would change this patient’s experience were co-created.

Ideations

Goals

There were three ideation sessions with two participants (me and one other person) utilizing inspiration cards (quotes and findings from the research phase, comparisons to public figures or brands) and “How might we” questions built on research and co-creation sessions. Sessions were built around "How Might We...?" questions.

Probing

Goals

Three directions were explored in probing exercises when participants lived with artifacts for about a week and recorded their experience and shared in multiple ways like a journal or responses to prompts arriving at random times via email.

My Journal

Tracking symptoms, mood, and thoughts in a structured way enriched with meaningful prompts. Learning from patterns and trends based on consistently tracking relevant symptoms and collaborating with the algorithm to spot relevant and actionable learnings. Keeping track of mental health with access to evidence-based tools.

Community Hubs

Small groups focused on 6-week-long programs bringing positive change and support. Run by specialists in their fields like nutrition or physical therapy and moderated for a guilt-free and enjoyable community experience.

Knowledge Base

Access to accurate and easy-to-digest information about living with endometriosis, treatment options, and possible lifestyle interventions along with real-life stories of different approaches to living with chronic conditions as well as access to experts.