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Measuring Patient Empowerment Through Structured Learning

Measuring Patient Empowerment Through Structured Learning

James Badman

It is widely recognized that patient empowerment plays a critical role in the treatment and management of a disease, and that patients should have a greater control over their health and care.

“[Patient empowerment is] a process through which patients gain greater control over decisions and actions affecting their health” - World Health Organization (WHO)

The MDS Foundation acknowledged that, although much of the information was already available to their patients, there was no single and centralized source of measurable information focused on empowering patients with their MDS.

Empowering the Community Through Measurable Learning

In partnership with the MDS Foundation and supported by Acceleron Pharma, Bristol Myers Squibb (BMS), and Novartis, we initiated a personalized and measurable education program that focused on three pillars: health literacy, self-management, and shared decision-making, consisting of the following modules:

  • Module 1: The essential facts
  • Module 2: Understanding the impact of MDS on your body
  • Module 3: Understanding your diagnosis
  • Module 4: Manging the signs and symptoms
  • Module 5: Treatment
  • Module 6: Patient empowerment

Via a mobile and web application powered by a learning management system (LMS), we set out to provide structured learning for newly diagnosed and long-term patients and their carers; empowering them to take better control of their disease. With the MDS Foundation already boasting a vast array of patient support resources, it was important we developed targeted education that was unique and recognizable, differentiating the tool from the others available.

Meet JOE: A Creative Solution to a Complex Problem

To support the campaign, we developed a character called “JOE”, short for “Journey Of Empowerment”.

Representing a nucleus, JOE:

  • Brings structure to a chaotic environment: collating key information and resources together in one place
  • Provides a recognizable face: taking patients, carers and loved ones on a journey of empowerment; through focused education around their disease
  • Supports the community: to be their own best advocates

“The atomic nucleus is a very dense region in the center of the atom. The nuclear force is a natural force that holds protons and neutrons together. This force keeps the subatomic particles nice and tight”

Listening to the Community:

Several JOE concepts were shared with the MDS community to understand which creative route had the greatest impact. Nobody knows what resonates best with patients than the patient community itself; we infused the patient voice at every step of the creative journey, from design through to delivery.

Reaching the Community:

In addition to being a familiar face within the app itself, it was critical that JOE reached as many people living with MDS as possible. This was achieved through consistent and sustained engagements across an array of social, web, and print channels.

Activating the Community:

We successfully collaborated and co-created with the community to design and develop an educational program that delivered meaningful outcomes to those affected by a disease. By working directly with the community (patients, professional society and industry), we demonstrated an improved level of health literacy and knowledge around MDS care and treatment, which fundamentally translates into better self-management and shared decision-making.

Click the links below to access MDS JOE

  • Click here for the web version
  • Click here for the Android App
  • Click here for the iOS App

About James Badman

As the 1st employee of Colab Health, James plays a key role in ensuring our company follows our principles as the team grows to support all things patient advocacy, professional education, and disease awareness.

As one of our leaders, James specializes in bringing communities together to address true unmet needs in healthcare; supporting the team to always:

- listen to the needs of a community

- embrace new ideas and ways of thinking

- champion equality and equal access to care

- advocate collaboration and multi-sponsored balanced education

- encourage sharing to accelerate progress

- do what is right for the patient

Articles by James Badman

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