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OUR WORK

You + M.E. Registry Website

CLIENT
The Solve ME/CFS Initiative
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Background + Challenge

Myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), is a debilitating disease that is underdiagnosed, underfunded, and not well understood. The Solve ME/CFS Initiative (SMCI) was launched to actively engage the entire ME/CFS community with the two-pronged goal of improving knowledge of its causes and aggressively expanding funding to support research that will lead to the discovery of safe and effective treatments.

 

To gather research data and drive interest within the healthcare community, SMCI created the You + M.E. Registry and Biobank, a collection of patient-reported data from people living with ME/CFS. It became clear to those behind the initiative that in order to better understand the disease and characterize subtypes, a large, rich data set gathered over time from thousands of people with ME/CFS, along with healthy controls, would be needed.

 

Owl’s Head was asked to build a website from the ground up that would speak to those with the disease and inspire them to register and contribute to the databank. An important feature of the site would be an interactive tool that would allow those living with the disease to answer questions about their day-to-day experiences and ultimately get a picture of how the disease was impacting their life. The site needed to be compelling, clear, and approachable, expressing a “we-get-it” empathy for patients, with an easy and intuitive interactive feature.

The brand refresh had four primary goals:

  • Allow users to visualize the impact ME/CFS has on their lives while providing a safe platform for them to share their experiences
  • Drive users towards joining the registry either as patients or healthy controls
  • Tell the story of ME/CFS from the patients’ perspective through a series of patient stories
  • Attract researchers and provide a pathway to accessing the data
Services
Services
Services Provided
Front End Development
Infographics
Interactive
Website Design + Development
Approach

We designed the website to be patient-centric, easy-to-use and welcoming. We wanted to make users feel that they are part of a community as they explore the site, which will lead to a higher rate of response and greater data collection when they proceed to join the registry. We chose a calming color palette to underscore approachability. We included a wealth of relatable, straight-into-the-camera patient stories. Explanatory videos about the registry were also featured to help to build trust in the program.

The unique “M.E. Impact Tool” is a focal point of the site. We structured it to take users through a series of questions about their daily experiences of living with ME/CFS. As they progress through the questions, they see a dynamic visualization of the impact the disease is having on their life. At the end of the questionnaire, each user is presented with a summary of a full year at a glance, including how many days were impacted by fatigue, days affected by PEM (post-exertional malaise), and how many activities they missed.

The interactive tool creates a powerful motivation for users to proceed to join the registry and be part of the research.

It has the added benefit of giving ME/CFS patients a compassionate “ear” which many of them do not have since so little is known about the disease. Being heard is incredibly meaningful to them.

To allow content to expand and the website to remain fresh, we built the site with a custom WordPress theme, enabling the client to make updates via an administrative backend which is a cost-effective and efficient approach. We designed and developed the site to be responsive so the user experience is optimized whether viewed on a desktop, tablet, or mobile device.

You + M.E. Registry Website Impact Tool front page
You + M.E. Registry Website Impact Tool
You + M.E. Registry Website home page on tablet
You + M.E. Registry Website on mobile
You + M.E. Registry Website toolkit on tablet

“The team at Owl’s Head exceeded our expectations not only creatively, but as solutions-finders for our impact tool and phased website rollout. They were able to meet our needs as the project changed and evolved, and in the end, the final result is a website we are really proud of that takes steps to promote a greater understanding of the disease in our search for the cure.”

—Sadie Whittaker, PhD, Chief Scientific Officer, The Solve ME/CFS Initiative
Impact

Based on the initial launch, the Solve ME/CFS Initiative team is confident that the website will be a crucial tool in promoting greater understanding of the disease and, most significantly, building the patient database that is key for funding research that will lead to a cure. Initial numbers are encouraging, reflecting the slow and steady build that was anticipated. The client is very pleased with the user-friendly interactive tool and the clear presentation of information.

Filed Under: Case Study, Featured