Medical Forums: Helpful or Harmful?

Most of us can likely recount a situation where some strange symptom, such as a lingering pain or a previously unnoticed bump has sent us searching the Internet for answers. Often times these searches do more harm than good, convincing us that we have a serious and fatal illness, and sending us running to the doctor, which may have been the best course of action in the first place. Through our panicked searching, we have likely stumbled across a forum discussing similar symptoms to our own. Sometimes these forums include a person asking someone who identifies themselves as a medical professional about their symptoms, though more often than not, it is simply regular people sharing their symptoms.

These forums are a double-edged sword; they can be a good place to discuss potentially embarrassing symptoms, such as those affecting areas that may be uncomfortable to talk to a doctor about. [1] They can dissuade anxiety by providing information that the symptom is generally benign and maybe even providing home remedies for minor symptoms. [1] However, these sources should be regarded with some skepticism, as the source of this advice may not be entirely reliable. Even the advice of those who claim to be a medical professional should be subject to scrutiny, for identity is very easily falsified on the internet. [1] As many sources suggest, advice on minor health concerns or lifestyle changes are likely harmless to take from the internet, though potentially severe problems should be examined by a health professional. [1] Constant forum use can also bring about hypochondria which can be characterized by symptoms of anxiety that are either quickly eradicated by negative test results or by a more clinical condition where a person is obsessively checking their symptoms and no number of tests seem to be enough to convince them that they are not ill. [2]

The increased use of online forums due to the many recent developments in technology has attracted the attention of researchers who hope to better understand people’s perception of certain diseases, [3, 4, 5, 6]management of their chronic conditions, [7,8,9] and to determine their potential use in monitoring public health threats. [3,10] Automated searching programs have been developed to better analyze forums and more quickly collect information [3].

A wide range of diseases has been examined, including drug abuse, [3] mental illnesses and suicide ideation, [5] diabetes, [4] as well as human papillomavirus (HPV) [6]. A study of drug abuse discussion in forums using an automated system found numerous cases of people discussing the explicit details of their drug use that they may not share with health professionals. [3] Furthermore, there were numerous instances of people encouraging the use of drugs, particularly opioids, and giving suggestions on how to obtain such drugs. This suggests that the use of online forums may contribute somewhat to the prevalence of substance abuse in modern society [3]. A study of suicide portrayal on the internet also revealed that people are very comfortable discussing taboo subjects in these forums, likely due to the anonymity the internet provides [5]. However, though most forums provide support and a strong anti-suicide message, the freedom of speech that forums facilitate allow pro-suicide messages to spring up. Again, this reflects the double-edged nature of online forums, where someone can both encounter support and be encouraged to make positive changes in their lives or pushed to do something that they may not have wanted to. Discussion of controversial topics like this can often become very heated, as anyone who has encountered a public discussion board or comment section can understand. Online discussions regarding the HPV vaccination program in Romania are a notable example of this [6]. Conversations on this subject were very polarized, with retractors of the vaccine relying on primarily pseudo-scientific arguments, conspiracy theories, and appeal to emotions, while supporters generally used science-based arguments or recounted personal experiences regarding people they knew being affected by cervical cancer. The fear and doubt elicited by the online retractors is likely the reason that many have not received the vaccine or allowed their children to do so.

Though there seems to be an even balance between negative and positive messages in these discussions, forums for chronic illnesses and conditions such as diabetes, [4] premature birth, [9] multiple sclerosis (MS), [11] polycystic ovarian syndrome (PCOS), [11] and Parkinson’s, [7] appear to provide a much more positive environment. These communities are often very supportive, providing information for those who are newly diagnosed and encouraging others to stick to their treatment plans [4, 7, 8]. Groups on the same subject are often connected, and prominent members may be shared between them, providing an even stronger sense of community [4]. They can provide information and personal experiences on new and/or controversial treatments, such as in the case of chronic cerebrospinal venous insufficiency (CCSVI) and MS, which national agencies may lag in providing [11]. Online communities may also organize events to help raise awareness and collect money to support research into the disease [9]. Medical professionals have become aware of the power of these communities and have begun using them as a way to provide support and information to patients [7,8].

Researchers have also begun using online forums for a variety of reasons, such as to detect health threats earlier [3,10] and to understand how individuals feel about public health organizations and their programs, like in the case of the HPV vaccine [6]. Information collected may help guide future programs and organization response to issues [6, 11].

Though online forums can provoke anxiety and poor decisions in some cases, they definitely provide a positive environment for individuals dealing with chronic illnesses. Researchers and medical professionals are also beginning to take notice of these communities as technology continues to advance and will likely incorporate its presence into their treatment approaches.

References:

  1. John R. Davis. “Men’s Health Forums- A Valuable Resource for Mens Health Advice?” Ezine Articles: Men’s Issues, 2007.
  2. April Cashin-Garbutt. “Hypochondria: are you a hypochondriac?” News-Medical.net, 2012.
  3. Delroy Cameron, Gary A. Smit, Raminta Daniulaityte, Amit P. Sheth, Drahti Dave, Lu Chen, Gaurish Anand, Robert Carlson, Kera Z. Watkins, and Russel Falck. “PREDOSE: A semantic web platform for drug abuse epidemiology using social media.” Journal of Biomedical Informatics (2013).
  4. T. Chomutare, E. Arsand, L. Fernandez-Lugue, J. Lauritzen, and G. Hartvigsen. “Inferring community structure in healthcare forums. An empirical study.” Methods of Information in Medicine 52 (2013): 160-167.
  5. Michael Westerlund, Gergo Hadlaczky, and Danuta Wasserman. “The Representation of Suicide on the Internet: Implications for Clinicians.” Journal of Medical Internet Research 14 (2012): e122.
  6. Marcela A. Penţa and Adriana Băban. “Dangerous Agent or Saviour? HPV Vaccine Representations on Online Discussion Forums in Romania.” International Journal of Behavioral Medicine (2013).
  7. Martijn van der Eijk, Marjan J. Faber, Johanna W. M. Aarts, Jan A. M. Kremer, Marten Munneke, and Bastiaan R. Bloem. “Using Online Health Communities to Deliver Patient-Centred Care to People with Chronic Conditions.” Journal of Medical Internet Research 15 (2013): e115.
  8. Heather R. Bishara. “Online Health Forums- Finding Answers & Community.” Ezine Articles: Health and Fitness, 2008.
  9. Emelie Maria Thoren, Boris Metze, Christoph Bührer, and Lars Garten. “Online support for parents of preterm infants: a qualitative and content analysis of Facebook ‘preemie’ groups.” Archives of Disease in Childhood. Fetal and Neonatal Edition 98 (2013): F534-F538.
  10. K. Denecke, M. Krieck, L. Otrusina, P. Smrz, P. Dolog, W. Nejdl, and E. Velasco. “How to Exploit Twitter for Public Health Monitoring.” Methods of Information in Medicine 52 (2013): 326-339.
  11. Antoinette von Pückler. “A patient’s perspective of partnership in the treatment of multiple sclerosis: MS regimes- An orchestrated approach.” Journal of the Neurological Sciences 335 (2013): 1-4.

Nicole Lefebvre is a 4th year undergraduate student at the University of Calgary majoring in neuroscience. Follow The Triple Helix Online on Twitter and join us on Facebook.

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