Online community provides essential emotional support during patient clinical trial

The Mayo Clinic Division of Brain Rehabilitation was faced with a dilemma.

Physicians had developed an outstanding treatment protocol for traumatic brain injury (TBI) with excellent results. But many older patients with TBI live in rural areas and are unable to travel to a large medical center for treatment.

How could Mayo Clinic bring the clinical care and emotional support patients needed to their local communities?

The solution: A clinical trial that connects patients, their families and providers with specialized brain rehabilitation providers through the innovative application of an online patient community. 

Dr. Allen Brown presented an overview of the trial at last month’s Social Media Health Network annual meeting in Rochester, Minn.

How this clinical trial works

  • The trial includes TBI patients in Minnesota, Wisconsin, North Dakota and South Dakota.
  • Patients receive care in their local communities.
  • Patients designate family members or significant others to be part of the community.
  • Providers join in.
  • All participants are connected to Mayo Clinic and each other through the CareHubs online patient community software.

The CareHubs software becomes a private, secure, personal care hub for emotional and clinical support. “One of the most frequent patient requests is, ‘I wish I could talk to someone else who has this,’” explained Dr. Brown.

The secure site includes:

  • Customized introductory videos for providers and for the patient and family.
  • Question and answer section featuring specialists who answer questions, suggest treatment options, and direct patients and providers to resources.
  • Conversation area where patients and their families can share experiences with one another and provide emotional support.
  • A platform for online events, education, and presentations.
  • Extensive user-level analytics.

When the trial ends, Dr. Brown hopes the intervention will result in:

  • Better participation outcomes.
  • More integration in community.
  • Greater satisfaction with care.
  • Local providers reporting that patients are more capable because they have skills they didn’t have before.

The trial has just begun, and results won’t be tabulated for some time, but this unusual use for online community software holds great promise for patient care. (Download a PDF summary of the clinical trial.) 

Thinking image designed by Jens Tärning from the Noun Project

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