Client

The Solve ME/CFS Initiative

Project

You + M. E. Registry Website

Client

The Solve ME/CFS Initiative

Project

You + M. E. Registry Website

Background

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 and healthy controls would be needed.

Audience

ME/CFS patients

Healthcare providers

Healthy controls

Researchers/research institutions

Services Provided

Website Design and Development Icon
Website design + development
Infographics
Infographics

Challenge

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 website had 4 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

Approach

We knew that the key to success would be how the site would engage readers so it needed to be compelling, clear and approachable, expressing a “we-get-it” empathy for patients living with this disease. The interactive tool had to be easy and intuitive while reassuring participants of their privacy.

 

Methodology

We designed the website to be patient-centric, easy-to-use and welcoming. We wanted to make users feel 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.

 

Website

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.

    • Calming color palette
    • Interactive personal “Impact” tool
    • Relatable patient stories
    • Explanatory videos
    • Modular, approachable, easy-to-digest design structure
    • Check out the website at youandmeregistry.com

Impact Tool

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, the tool dynamically displays a 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. This creates a powerful motivation for users to proceed to join the registry and be part of the research, and also has the added benefit of giving ME/CFS patients a compassionate “ear.” Since so little is known about the disease, being “heard” proves an incredibly meaningful experience for each user.

Response

Based on the initial launch, the client is confident that it 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 and ultimately leading 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.

“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