autoimmune research, digital health, patient stories

Patient Communities: Filling an Unmet Need

As a continuation of “Getting Healthy is a Team Sport,” we will now look at what patients do online and what purpose patient communities serve.

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Why do patients go online?

A 2004 survey shows how patients dissatisfied with traditional medical care turn to the internet instead:

  • 40% felt that their doctor did not completely listen to them during their last office visit.
  • 72% felt that they did not receive a thorough explanation of treatment side effects.
  • 53% had questions they wanted to ask but did not, either because the visit was too rushed or because the patient felt embarrassed.

What do patients do in online communities?

Patient Empowerment

Online communities may offer meaningful relief from the hardships associated with chronic illness.

The Massachusetts study describes a group called Club Avonex (named for the Multiple Sclerosis drug of the same name):

  • Patients administer the drug themselves, but the injections can be painful.
  • In Club Avonex, patients from different locations scheduled their daily injections at the same time so they could support one another through the process.

A 2009 study of patients with various chronic conditions found that online participation led patients to feel a greater sense of social well-being.

  • A 2012 study of Korean diabetes patients had similar results: online community members reported feeling greater empowerment and motivation to communicate proactively with their physician.
  • This demonstrates how the appeal of patient communities extends beyond the English-speaking world.

A 2010 study confirmed that reading online health forums made patients more confident when speaking with their physicians.

  • Both patients and doctors know that when patients become more proactive and informed, the paternalistic doctor-patient relationship is challenged.
  • Despite doctors’ concerns, however, patients who participated in online communities did not become more dissatisfied with their physicians or with traditional health services in general.

Online patient communities serve as a useful way for patients to seek medical information and empowerment among others who are going through a similar experience. In addition, patients in a 2005 study reported that the online community they participated in had a positive impact on their online lives.

Based on this, what are some of the beneficial behaviors and outcomes that result from participating in online communities?

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Healthy Behaviors

A 2010 study looked at a program to help at-risk, sedentary adults increase their physical activity.

  • Interacting and encouraging one another in the online community did not increase the amount of physical activity.
  • However, it did reduce attrition rates.
  • This provides evidence that group-based health interventions are more effective, as Mark Hyman claims in his TedMed talk.

A 2012 study on smoking cessation found that those engaged in an online community forum were more likely to successfully quit smoking.

Together, these studies suggest that the support of one’s peers in an online community can help healthy habits stick.

Physical and Emotional Wellbeing

A 2011 study distinguishes between two kinds of participants in a Japanese breast cancer online community

  1. Lurkers who view content but do not post.
  2. Posters who contribute content.

While both groups experienced enhanced well-being, the posters benefited more.

A 2010 study on diabetes self-management among ethnically diverse populations showed that participants in an interactive online program:

  • Reported greater feelings of self-efficacy and patient activation (a measure of confidence and knowledge with respect to managing one’s health).
  • Also showed improved hemoglobin levels.

This demonstrates that participating in a community enhances both emotional and physiological health. Together, the health benefits and the empowerment that patient communities provide may ease a patient’s experience with a disease.

How can we encourage those with multiple autoimmune diseases to form new communities that support the common elements of all autoimmune diseases?

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