When Patient Advocacy Goes Global

When Patient Advocacy Goes Global

It was an honor to discuss Innovation in Patient Engagement From the Patient & Carepartner Perspective at the 9th Global Digital Health Partnership Summit.

Understanding the patient is of essence and yet the word “patient” is one of the most misunderstood words in healthcare’s vocabulary. There is a patient life experience continuum that best captures what it means to live life as a patient where there are 5 categories of being a patient.

First is the proactive wellness seeker who may be generally healthy. Then is someone who may have had an acute encounter with the health care system: perhaps someone rushed to the ER after a motor vehicle accident or a work-related accident that needs stitches. Next is the person living with chronic illness or multiple comorbidities. The fourth category is an individual who receives an life-altering life-limiting diagnosis like cancer or ALS. The fifth and final category is active death or end of life care.

All of these are patients with unique experiences and unmet needs but this is a very clinical view of the patient. We must also incorporate social determinants of health as we look to understand patient experiences where they are. Any individual living with the impact of social determinants of health is going to face greater barriers to accessing health and good patient experiences and care overall. This is survival mode, not consumerism. The difference matters.

Here’s what is at the top of my list as we globally explore and prioritize what we convert from white papers to real-world workstreams when we think about patient engagement:

  • Reduce patient administrative burden to make life with a diagnosis easier
  • Digitize inefficient patient workflows
  • Improve channels for direct communication with staff at health care delivery organizations
  • Include patients’ carepartners in engagement strategies
  • Embrace patient and carepartner insights throughout your patient engagement innovation lifecycle
  • Connect patients to peer health and community health support

Innovators and stakeholders must recognize:

  • where patients are in their Life Experience Spectrum
  • assess #SDoH/barriers to engaging in care
  • Listen & learn from patient stories, like the Patient Impact Stories Library https://lnkd.in/ePztdd4

I look forward to seeing if the world listens and really hears what patients want and need in 2022.


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