The role of online peer experts for vascular disease

  “Set of lay users who have gained expertise on the particular health topic through personal experience, [by having the condition, or having a loved one with the condition], and who demonstrate credibility in responding to questions from other members” Vydiswaran and Reddy (2019).

 Physicians are a much appreciated and critical resource for peer experts working in online health forums. In contrast, the expertise of peer experts, while being of considerable value to patients, is rarely exploited by physicians. This should be addressed.

 Physicians are busy, patients generally have little or no medical training, leaving limited opportunity for feedback from patient to physician, and vice versa. This missed opportunity can be corrected by promoting active input from physicians and medically trained patients. Due to the rise of the Internet, and increased public facility with accessing and employing websites, the number of patient forums is growing rapidly (Gopalsamy R., et al., 2017). Such forums address a wide range of diseases, through tinnitus, diabetes, rare genetic conditions, and life threatening arterial aneurysms. Peer experts are important members of such fora, providing a valuable link between novice members and physician advisors.

 Recent studies have revealed the value and risks of open patient forums on social media sites, such as Quora and Reddit. For example, Mohammad Alarifi et al., (2021) used open patient forums to find “major unmet patient needs and information gaps in radiology reports.” Social media present opportunities “… to improve or enhance professional networking and education, organizational promotion, patient care, patient education, and public health programs…” (C. Lee Ventola, 2014).

However, open patient forums “… also present potential risks to patients and HCPs regarding the distribution of poor-quality information, damage to professional image, breaches of patient privacy, violation of personal–professional boundaries, and licensing or legal issues (C. Lee Ventola, 2014).

Such challenges might encourage medical staff oversight, which can come with a tendency for excessive control, especially when legal concerns are raised. The medical community has been besieged by the threat of litigation for many years (Kavic MS, 2004), which, in addition to time constraints (Knight S. et al., (2019), may render physicians and surgeons reluctant to run the risks associated with commenting on online health forums (ACOG Clinical Opinion, 2019). This might be especially the case for those working for institutions with “deep pockets,” who might tend to restrain such activities.

 If faith in the health care system is declining, how are we to improve the situation. Clearly, patients need solid advice and guidance, but physicians aren’t always right. There is too much dependence on pills for treatment of a wide range of conditions, which has resulted in the growing problem of polypharmacy (Katella K, 2020), not to mention the problem of drug addiction in health providers (Goldenberg M et al., 2020).

 Online health forums are populated by a wide range of individuals with respect to eduction, politics, social standing, and the severity of their condition. A small number of such patients are medically trained, and others have become extensively educated in the nature of the condition upon which the forum is focused. Such patients are defined as “peer experts.” Vydiswaran and Reddy (2019) recommend the identification of such experts, ones who “demonstrate credibility in responding to questions from other members” in health forums, in order to assess their characteristics.

High level communication between peer experts and appropriate medical specialists, could do much to improve the quality of information and advice published on health forums, to the benefit of both the public and physicians. Fortunately, work is ongoing to “enhance and support peer-to-peer and patient-provider interactions on online platforms” (Nobles AL et al., 2020), as this field evolves.

 The perception of trustworthiness of health advice from online peers is influenced by a number of factors (Rueger J. et al., 2021), an important one being whether the advice comes from a health “peer,” i.e. one also suffering the condition addressed by the forum. However, while online information may reduce the information gap between the clinician and the patient (Lee and Wu, 2014), it could be perceived as challenging the doctor’s expertise (Broom, 2005).

Such challenges could reduce public trust of doctors. Studies of online health forums indicate that patients tend to trust their peers, those with similar health challenges (Brady et al., 2016). There is evidence that the Internet is responsible for decreasing trust of doctors (Digitalis Blog), as opposed to their peers.

 Peer experts, whether medically trained or not, can act as a powerful buffer between physicians, their patients, and the general public. The key to the value of peer experts is their need to develop the trust of physicians, as opposed to being seen as an irritation, even a threat. Physicians who can monitor, rather than attempt to control, online health forum discussions, play a critical role in reducing the spread of misinformation and potentially harmful, even lethal, advice.

Doctors and surgeons can give inconsistent advice to patients, as there is no gold standard for each and every condition for each and every person. Should someone who’s had abdominal surgery return to playing golf? Well, it depends on many factors, including how important golf is to that person, and what type of surgery, and how well they handled it. Peer experts are in regular communication with such patients, putting them in a good position to provide guidance.

However, should peer experts be assessed for their state of knowledge? I could find little information on this issue. One study concluded, “Online health communication largely focuses on provision of experiential responses to assist those in need of pre- or post-diagnosis advice and support. However, there is evidence of inaccurate information provision which suggests the use of a moderator would be beneficial” (Farnood et al. 2021).

 Solution one: Have medical experts monitor online forums for inaccuracies and poor advice. Such monitoring would inhibit free communication between patients who already have health providers. One key to effective forums is free debate, while it is up to administrators of the forum to monitor the site. This would suggest that the best forum administrators would have detailed knowledge both of and with the conditions being discussed. Furthermore, many of the issues being discussed, such as challenges with family, health insurance, workman’s comp, and so forth, do not lie within the expertise of most physicians.

Solution two: Provide training and certification for online peer experts. Such a system would be onerous, and would probably limit peer expert activities. This is unlikely to fly due to cost, and who wants to get certified in later life, as many peer experts are in their 60s, 70s, even 80s.

Solution three: Improve communication between physicians and online health forum peer experts, to encourage professional medical guidance. It is also critical that physicians listen to the reported observations and opinions of peer experts, in order to promote patient input, and improve therapeutic approaches. Such two-way communication could address the growing need for life-style changes, to which there are clear barriers (Bharati R et al., 2023). Peer experts with experience of the health advantages of life-style changes, for their specific malady, are in an ideal position to disseminate their knowledge, especially if their efforts are supported and promoted by physicians.

  Temple Grandin: Just watch the movie, when Temple Grandin is asked to replace the psychologist “expert” on the podium. The parents of children with autism wanted to hear from her because she really understood what it is like to have autism (actually Aspergers, whatever the DSM5 says), and, thanks to Temple’s mother, Temple Grandin was living a full and successful life, in spite of her Asperger’s phenotype.

Kym McNicholas: The Peripheral artery disease (PAD) Support forum (https://www.facebook.com/groups/1286772908004411), managed by Kym McNicholas, has over 5,000 members. Physicians with expertise in vascular disease, especially PAD, are frequently invited to speak to the group. Kym has a “stable” of such experts, in addition to a number of peer expert patients as members of the group. This group successfully provides support to sufferers of PAD, along with encouraging a walking program for the growth of collaterals. One of Kym’s principal objectives is amputation prevention. This forum is an example of the successful application of solution three, above, improved communication between peer experts and relevant medical professionals.

Kevin Thomas Morgan: As a person with both medical training and vascular disease, the author of this white paper knows the challenges of giving good, science-based advice to other patients with both an abdominal aortic aneurysm (AAA) and PAD. He also created the Facebook Page, Living with and Abdominal Aortic Aneurysm, which now has over 1,000 members who appreciate his input as a peer.

 Peer experts in online health forums have a beneficial role to play in modern medicine, especially if their work is integrated with and guided by the appropriate medical experts. Solution number three, improved communication between peer experts, some of which are medically trained, and physicians in the relevant discipline, would be preferable to draconian oversight. This might be easy to initiate, as many online health forums have physicians as members, and in some cases, patients.

ABOUT THE AUTHOR

Dr. Morgan is a veterinary pathologist and owner of Old Dogs in Training, LLC, a company dedicated to encouraging fitness for life.

Dr. Morgan, who has extensive training in body-movement skills, created the FaceBook forum, Living With An Abdominal Aortic Aneurysm, and he is an active member of several other forums, in a number of which he is considered a peer expert.

Dr. Morgan can be reached at olddogintraining@gmail.com or the following websites:

https://athletewithstent.com/

https://inspirationalselfhelpbooks.com/

https://www.facebook.com/groups/576574729149516

 ACOG Clinical Opinion (2019). Professional Use of Digital and Social Media: Committee Opinion CO Number 791, October 2019. https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2019/10/professional-use-of-digital-and-social-media

Alarifi, M et al. (2021). Understanding patient needs and gaps in radiology reports through online discussion forum analysis. Insights Imaging. 2021 Apr 19;12(1):50. doi: 10.1186/s13244-020-00930-2

Bharati R et al., (2023). Incorporating Lifestyle Medicine Into Primary Care Practice: Perceptions and Practices of Family Physicians. Am J Lifestyle Med. 2022 Mar 2;17(5):704-716. doi: 10.1177/15598276211072506. eCollection 2023 Sep-Oct.

Brady E et al. (2016). “You get to know the people and whether they’re talking sense or not”: Negotiating trust on health-related forums. Soc Sci Med. 2016 Aug; 162: 151–157. doi: 10.1016/j.socscimed.2016.06.029

Broom A (2005). The eMale: prostate cancer, masculinity and online support as a challenge to medical expertise. J. Sociol., 41 (1) (2005), pp. 87-104

Digitalis Blog (no date available). Why Patients Don’t Trust Healthcare Providers in the Digital Age. https://digitalismedical.com/blog/patients-dont-trust-healthcare/

Goldenberg et al. (2020). Outcomes of Physicians with Substance Use Disorders in State Physician Health Programs: A Narrative Review. J Psychoactive Drugs. 2020 Jul-Aug;52(3):195-202. doi: 10.1080/02791072.2020.1734696. Epub 2020 Mar 11.

Gopalsamy R (2017). Engagement as a Driver of Growth of Online Health Forums: Observational Study. J Med Internet Res. 2017 Aug; 19(8): e304. doi: 10.2196/jmir.7249

Katella K (2020). Use of multiple medications can lead to misdiagnoses, adverse effects, and trips to the emergency room. Yale Medicine, Doctors & Advice, Family Health, August 31, 2020. https://www.yalemedicine.org/news/polypharmacy

Kavic MS (2004) The US Medical Liability System—A System in Crisis. JSLS. 2004 Jan-Mar; 8(1): 1–2.

Knight S et al. (2019). Ethical issues in the use of online social media forums by GPs. Br J Gen Pract. 2019 Apr; 69(681): 203–204. doi: 10.3399/bjgp19X70210

Lee YC and Wu WL (2014). The effects of situated learning and health knowledge involvement on health communications.

Nobles AL et al. (2020). Examining Peer-to-Peer and Patient-Provider Interactions on a Social Media Community Facilitating Ask the Doctor Services. Proc Int AAAI Conf Weblogs Soc Media. Proc Int AAAI Conf Weblogs Soc Media. 2020 Jun; 14: 464–475.

Rueger J et al. (2021). Perception of peer advice in online health communities: Access to lay expertise. Social Science & Medicine Volume 277, May 2021, 113117. Social Science & Medicine. Reprod. Health, 11 (1) (2014). doi.org/10.1016/j.socscimed.2020.113117

Author links open overlay panel Jasmina Rueger a, Wilfred Dolfsma a, Rick Aalbers b 

Ventola, CL (2014). Social Media and Health Care Professionals: Benefits, Risks, and Best Practices. Pharmacy and Therapeutics (P&T), 2014 Jul; 39(7): 491-499, 520. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4103576/https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4103576/

Vydiswaran, VGV and Reddy, M (2019). Identifying peer experts in online health forums, BMC Med Inform Decis Mak. 2019; 19(Suppl 3): 68. doi: 10.1186/s12911-019-0782-3