Skip to content
  • About
  • Contact
  • Contribute
  • Book
  • Careers
  • Podcast
  • Recommended
  • Speaking
  • All
  • Physician
  • Practice
  • Policy
  • Finance
  • Conditions
  • .edu
  • Patient
  • Meds
  • Tech
  • Social
  • Video
    • All
    • Physician
    • Practice
    • Policy
    • Finance
    • Conditions
    • .edu
    • Patient
    • Meds
    • Tech
    • Social
    • Video
    • About
    • Contact
    • Contribute
    • Book
    • Careers
    • Podcast
    • Recommended
    • Speaking

5 benefits of online patient communities

David Lee Scher, MD
Social media
June 28, 2013
96 Shares
Share
Tweet
Share

If one searches for “online patient communities” over 19 million Internet sites are found.  Online patient communities (OPCs) may exist as subgroups of social media sites, non-profit organizations, and increasingly as part of websites of healthcare organizations and stand alone sites.

Online communities are now becoming a rich source of information gleaned from their discussions.  This information will be increasingly used for both clinical and commercial purposes. I will touch on themes which are universal to online health communities.  For a discussion citing specific examples, I would refer you to an excellent post by David Shaywitz.  Physicians have expressed concerns about online communities.  If appropriately conducted, like social media in general, I don’t believe these are barriers to acceptance or participation.

1.  OPCs provide education.  While surveys show that most people still prefer to go to a physician to receive a diagnosis for signs or symptoms, many seek a diagnosis online.  One should follow some helpful hints about seeking information online.  One interesting study found that it is the information seeking effectiveness rather than the social support which affects patient’s perceived empathy in online health communities run by healthcare organizations.  One might think that a similar study conducted on social media sites would have the opposite result (see below).  While confidentiality and accuracy of information are legitimate concerns, as long as the participant is aware of these issues, useful information can be provided via OPCs, especially if physicians and other providers are members.

2.  OPCs provide emotional support.  Although OPCs have been touted as providing emotional support, few studies have been conducted in this arena.  One study of 528 patients with breast cancer, arthritis, and fibromyalgia who participated in OPCs demonstrated patient empowerment The empowering outcomes that were experienced to the strongest degree were “being better informed” and “enhanced social well-being.” No significant differences in empowering outcomes between diagnostic groups were found.  Another study, utilizing sentiment analysis and natural language processing techniques is being conducted to determine the various strength of emotions in online discussions and to compare emotional status of men vs women, patients vs caregivers and inquirer vs responders.

3.  OPCs provide other resources.  OPCs whether affiliated or not with healthcare systems or non-profit organizations often (and should if they are good) provide links to commercial, governmental, health and other support services. In addition, community members themselves might offer even more accurate and appropriate first-hand advice regarding these resources.  Logistical (living arrangements, medical and surgical equipment), financial, communication, legal, and other advocacy concerns are commonly addressed in OPC discussions and websites.

4.  OPCs provide information and tools for caregivers.  As regular followers of this blog know, a common thread of many of posts is the involvement or focus of the caregiver by technologies. Caregivers are the front line of advocacy for their loved one or patient. They have special needs and require different tools. As advocates, they too require emotional support as stress and burnout are common.  Online communities devoted to caregivers provide additional avenues of support.

5.  OPCs provide a forum for patients, caregivers, and providers to interact. Aside from the office, it might be impossible for patient, caregiver, and provider to collectively discuss even generalities about the patient’s disease or condition.  While a provider in an OPC will in all likelihood not be the patient’s personal one, hearing from the ‘other side’ is a good experience for all concerned.  Respecting confidentiality, much can be learned from discussions.  I experienced this first hand when conducting my own patient support group for 20 years.

OPCs are replacing in-person support groups (though there are pros and cons to both). They are easily accessible, cross geographic and cultural barriers, and can involve all stakeholders in the healthcare ecosystem from which all may benefit.

David Lee Scher is a former cardiologist and a consultant, DLS Healthcare Consulting, LLC.  He blogs at his self-titled site, David Lee Scher, MD.

Prev

Obamacare fails by not listening to the voices of the caregivers

June 28, 2013 Kevin 13
…
Next

How should we be training the next generation of doctors?

June 28, 2013 Kevin 9
…

Tagged as: Patients

Post navigation

< Previous Post
Obamacare fails by not listening to the voices of the caregivers
Next Post >
How should we be training the next generation of doctors?

More by David Lee Scher, MD

  • Want a successful digital health initiative? These 5 things need to happen first.

    David Lee Scher, MD
  • a desk with keyboard and ipad with the kevinmd logo

    How mobile technology can improve clinical trials

    David Lee Scher, MD
  • a desk with keyboard and ipad with the kevinmd logo

    Pharma needs physician digital key opinion leaders. Here’s why.

    David Lee Scher, MD

More in Social media

  • From penicillin to digital health: the impact of social media on medicine

    Homer Moutran, MD, MBA, Caline El-Khoury, PhD, and Danielle Wilson
  • Blogging for beginners: tips for success in any niche

    Aaron Morgenstein, MD & Claire Unis, MD
  • Uncovering the hidden struggles of NYC nurses: an insider’s perspective [PODCAST]

    The Podcast by KevinMD
  • What I learned after being hacked on social media

    Cindy Tsai, MD
  • On the internet, you are looking for something to make you angry

    Judson Ellis
  • They didn’t teach social media in medical school

    David Epstein, MD
  • Most Popular

  • Past Week

    • The real cause of America’s opioid crisis: Doctors are not to blame

      Richard A. Lawhern, PhD | Meds
    • Healing the damaged nurse-physician dynamic

      Angel J. Mena, MD and Ali Morin, MSN, RN | Policy
    • The struggle to fill emergency medicine residency spots: Exploring the factors behind the unfilled match

      Katrina Gipson, MD, MPH | Physician
    • What is driving physicians to the edge of despair?

      Edward T. Creagan, MD | Physician
    • Deaths of despair: an urgent call for a collective response to the crisis in U.S. life expectancy

      Mohammed Umer Waris, MD | Policy
    • Beyond the disease: the power of empathy in health care

      Nana Dadzie Ghansah, MD | Physician
  • Past 6 Months

    • The hidden dangers of the Nebraska Heartbeat Act

      Meghan Sheehan, MD | Policy
    • The real cause of America’s opioid crisis: Doctors are not to blame

      Richard A. Lawhern, PhD | Meds
    • The vital importance of climate change education in medical schools

      Helen Kim, MD | Policy
    • The fight for reproductive health: Why medication abortion matters

      Catherine Hennessey, MD | Physician
    • Nobody wants this job. Should physicians stick around?

      Katie Klingberg, MD | Physician
    • Resetting the doctor-patient relationship: Navigating the challenges of modern primary care

      Jeffrey H. Millstein, MD | Physician
  • Recent Posts

    • The harmful effects of shaming patients for self-education

      Maryanna Barrett, MD | Physician
    • The power of self-appreciation: Why physicians need to start acknowledging their own contributions

      Wendy Schofer, MD | Physician
    • The endless waves of chronic illness

      Michele Luckenbaugh | Conditions
    • Skydiving and surgery: How one doctor translates high-stress training to saving lives

      Alexandra Kharazi, MD | Physician
    • Telemedicine in the opioid crisis: a game-changer threatened by DEA regulations

      Julie Craig, MD | Meds
    • How this doctor found her passion in ballroom dancing [PODCAST]

      The Podcast by KevinMD | Podcast

Subscribe to KevinMD and never miss a story!

Get free updates delivered free to your inbox.


Find jobs at
Careers by KevinMD.com

Search thousands of physician, PA, NP, and CRNA jobs now.

Learn more

View 1 Comments >

Founded in 2004 by Kevin Pho, MD, KevinMD.com is the web’s leading platform where physicians, advanced practitioners, nurses, medical students, and patients share their insight and tell their stories.

Social

  • Like on Facebook
  • Follow on Twitter
  • Connect on Linkedin
  • Subscribe on Youtube
  • Instagram

CME Spotlights

From MedPage Today

Latest News

  • Children Do Well With Fewer Opiates After Surgery
  • High Out-of-Pocket Costs Tied to Less Follow-Up After Initial Mammography
  • Do We Need a Spring COVID-19 Booster?
  • Advances in Diagnosis and Management of Severe Cutaneous Adverse Reactions
  • Are We Losing the Personal Touch Because of the Way We Staff?

Meeting Coverage

  • Children Do Well With Fewer Opiates After Surgery
  • Advances in Diagnosis and Management of Severe Cutaneous Adverse Reactions
  • Orismilast Clears Skin in Moderate-to-Severe Psoriasis
  • New Combinations Promising in Advanced Urothelial Carcinoma
  • No Survival Benefit With CRT Versus Chemo for Locally Advanced Endometrial Cancer
  • Most Popular

  • Past Week

    • The real cause of America’s opioid crisis: Doctors are not to blame

      Richard A. Lawhern, PhD | Meds
    • Healing the damaged nurse-physician dynamic

      Angel J. Mena, MD and Ali Morin, MSN, RN | Policy
    • The struggle to fill emergency medicine residency spots: Exploring the factors behind the unfilled match

      Katrina Gipson, MD, MPH | Physician
    • What is driving physicians to the edge of despair?

      Edward T. Creagan, MD | Physician
    • Deaths of despair: an urgent call for a collective response to the crisis in U.S. life expectancy

      Mohammed Umer Waris, MD | Policy
    • Beyond the disease: the power of empathy in health care

      Nana Dadzie Ghansah, MD | Physician
  • Past 6 Months

    • The hidden dangers of the Nebraska Heartbeat Act

      Meghan Sheehan, MD | Policy
    • The real cause of America’s opioid crisis: Doctors are not to blame

      Richard A. Lawhern, PhD | Meds
    • The vital importance of climate change education in medical schools

      Helen Kim, MD | Policy
    • The fight for reproductive health: Why medication abortion matters

      Catherine Hennessey, MD | Physician
    • Nobody wants this job. Should physicians stick around?

      Katie Klingberg, MD | Physician
    • Resetting the doctor-patient relationship: Navigating the challenges of modern primary care

      Jeffrey H. Millstein, MD | Physician
  • Recent Posts

    • The harmful effects of shaming patients for self-education

      Maryanna Barrett, MD | Physician
    • The power of self-appreciation: Why physicians need to start acknowledging their own contributions

      Wendy Schofer, MD | Physician
    • The endless waves of chronic illness

      Michele Luckenbaugh | Conditions
    • Skydiving and surgery: How one doctor translates high-stress training to saving lives

      Alexandra Kharazi, MD | Physician
    • Telemedicine in the opioid crisis: a game-changer threatened by DEA regulations

      Julie Craig, MD | Meds
    • How this doctor found her passion in ballroom dancing [PODCAST]

      The Podcast by KevinMD | Podcast

MedPage Today Professional

An Everyday Health Property Medpage Today iMedicalApps
  • Terms of Use | Disclaimer
  • Privacy Policy
  • DMCA Policy
All Content © KevinMD, LLC
Site by Outthink Group

5 benefits of online patient communities
1 comments

Comments are moderated before they are published. Please read the comment policy.

Loading Comments...