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Social networking sites: a novel portal for communication
  1. A D Farmer1,
  2. C E M Bruckner Holt2,
  3. M J Cook3,
  4. S D Hearing4
  1. 1
    Wingate Institute for Neurogastroenterology, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, Whitechapel, London, UK
  2. 2
    Hereford County Hospitals NHS Trust, Union Walk, Hereford, Herefordshire, UK
  3. 3
    University of Birmingham Medical School, Vincent Drive, Edgbaston, Birmingham, UK
  4. 4
    Mid Staffordshire General Hospital, Weston Drive, Stafford, Staffordshire, UK
  1. Correspondence to Dr A D Farmer, Clinical Research Registrar, Wingate Institute for Neurogastroenterology, Queen Mary University of London, 26 Ashfield Street, Whitechapel, London E1 2AJ, UK; a.farmer{at}qmul.ac.uk

Abstract

Background: The internet has transformed many spheres of society. Most notably the advent of social networking websites, such as MySpace, Bebo and Facebook, have attracted many millions of users worldwide. There are over 350 such sites in operation across the internet. There is a paucity of data in the adult literature examining the medical usage of this interesting facet of modern life.

Aims: To ascertain whether Facebook has user groups that are connected with common medical conditions, and to classify the user groups that were identified as well as enumerating the number of individual users contained therein.

Methods: We conducted a search of the entire Facebook website between December 2007 and January 2009. We used medical and lay nomenclature for the most prevalent non-communicable diseases as identified from the World Health Organisation Burden of Disease publication to identify whether they were represented among individual Facebook users and user groups.

Results: We identified 290 962 individual users who were part of 757 groups. Patient groups accounted for 47.4%, patient/carer support groups 28.1%, fund raising groups 18.6%, and others 5.8%. Notably, there were other groups containing representations from the scientific research community in addition to educational resources. The groups with the most individual members pertained to malignant neoplasms and cardiovascular disease (141 458 users) consistent with their worldwide prevalence.

Conclusions: Facebook is providing a readily accessible portal for patients, carers and healthcare professionals to share their experiences of investigation, diagnosis and management of disease. Furthermore, this technology is being used for research, education and fundraising. Further research is warranted to explore the further potential of this new technology.

  • communication
  • culture
  • general medicine
  • social networking sites

Statistics from Altmetric.com

The rapid evolution of the internet has transformed many spheres of life and has changed the nature and manner in which individuals communicate.1 2 In this respect, social networking sites have profoundly influenced how people interact online. Websites such as MySpace, Bebo and Facebook have attracted millions of users worldwide, many of whom have integrated these sites into their daily routine. It has been estimated that there are over 350 such sites in operation across the internet (http://mashable.com/2007/10/23/social-networking-god/). Social networking may be defined as “online spaces that allow individuals to present themselves, articulate their social networks and establish and maintain connection with others.”3

It has been estimated that approximately 25 million people in the UK are now members of one or more social networking sites, making an average of 23 visits and spending 5.3 h per month, equating to approximately 11 min per user per day (http://www.telegraph.co.uk/news/main.jhtml?xml = /news/2007/12/12/nfbook112.xml). The most popular social networking site in the UK is Facebook, which has in excess of 150 million active users worldwide with an average of 250 000 new registrations per day (A Wessels, Bite Communications, on behalf of Facebook Inc, personal communication, 2008). Facebook usage in the UK is growing at an exponential rate with a population penetrance—defined as the number of active users divided by the total population—of 18.44% (http://www.nickburcher.com/2008/07/facebook-user-numbers-by-country-and.html). The demographics of the UK Facebook user are rather surprising; over 35% of users are 35 years and older (A Wessels, Bite Communications on behalf of Facebook, personal communication, 2008). Therefore, we postulate that social networking sites are being utilised by a wide variety of individuals for medical and scientific purposes. While information technology has had a significant impact on medicine in the recent past, there is a paucity of data in the adult literature examining the medical usage of social networking sites.

The aim of this paper is to ascertain whether Facebook had user groups that were connected with common medical conditions. In addition, we sought to classify the user groups that were identified as well as enumerating the number of individual users contained therein. These individuals are hereinafter termed “stakeholders.” We also aimed to provide a general overview of whether there were any areas of concern in the manner in which stakeholders were using this technology.

Methods

Common medical disease classification

Using the International Classification of Diseases 10 (ICD-10) codings, we selected the most prevalent diseases within each coding group defined by the worldwide prevalence data from the World Health Organization Global Burden of Disease publication.4 5 Non-communicable diseases, rather than communicable ones, were chosen as they display a greater degree of chronicity, and hence represent a more stable population base, and therefore we hypothesised they are more likely to be represented on the Facebook site.6 We undertook searches of the entire Facebook website from December 2007 to January 2009, to evaluate whether user groups existed that represented these diseases.

Search terms

In order to search the Facebook site in a comprehensive fashion, we chose both medical and lay nomenclature for these pathologies (table 1), for the search terms used. The medical and lay search terms that were used were agreed through consensus opinion by the study investigators and were inclusive rather than exclusive. Both UK and US English spellings were used in the search terms. The search terms for each disease were inputted into the search facility of the Facebook website.

Table 1

Summary of the search results from the Facebook social networking site collated as per their ICD-10 classification, the medical and lay search terms that were used for the search as well as the number of groups identified

Group classifications

We classified groups in terms of whether they were patient groups, support groups, fundraising/charity groups or others such as research, educational and social groups. Patient groups were defined as any peer group whose membership comprised disease sufferers. Support groups were defined as any group that encompassed carers, relatives or healthcare professionals providing support to each other and/or disease sufferers. Fundraising/charity groups were defined as registered charitable groups, international, national or local, or individuals in which monies may be pledged directly or through an active hyperlink. Other groups that were identified as being of relevance to the disease, but not falling into one of the aforementioned categories, were included—for example, research or educational groups.

Notable findings

For each of the groups that were identified the investigator also noted any other interesting findings/comments within the groups that were thought to be of interest. Furthermore, areas of concern that groups raised were also documented.

Upon identifying user groups, each was interrogated in turn to record the number of individual users. The results of the searches that were undertaken allowed us to identify whether the medical conditions we searched for were contained within the fabric of the Facebook website as well being able to classify user groups, enumerating individual representation within each as well recording areas of note and areas of concern. Results are expressed as number of groups with numbers of individuals per group contained within each category of disease classification.

Results

We identified 290 962 individual users who were part of 757 different groups. The most common groups were patient groups (47.4%) followed by support groups (28.1%) and fundraising groups (18.6%). Of the other groups that were identified 14/44 (31.8%) were associated with research and research collaboration, 8/44 (18.2%) with “socialising” aspects, and 2/44 (4.5%) with stakeholder education (table 1). The malignant neoplasm and cardiovascular disease groups had the most number of individuals associated with them (77 822 users and 63 663 users, respectively) consistent with the high prevalence of these disease groups in the general population. However, less prevalent diseases, such as inflammatory bowel disease (IBD), had a larger representation than expected (14 924 users).

Patient groups and support groups

The “patient” and “support” groups accounted for 572/757 (75.6%) of the groups that we identified, accounting for 244 308 individual users (83.9% of the total).

It was evident that patients are “comparing notes” regarding investigations, treatment and even their physicians! Groups such as “Humira (adalimumab) Junkies” and “I get Remicade (infliximab) infusions because I’m hardcore” only serve to illustrate this point.

Fund raising/charity groups

Facebook has attracted large numbers of charities and fund-raisers; we indentified 141 separate groups with a membership of 32 025.

National patient charities such as Cancer Research UK, Diabetes UK and the British Heart Foundation are using social networking technology to enable users to donate money in exchange for virtual “gifts” which the user may then bestow on other contacts. Twenty-seven groups with 12 412 users were associated with a variety of sponsored events for medical charities.

Other groups

During the extensive searches we found 44 user groups with 14 629 individuals users that we classified as being part of “other groups”. Of these groups we found some notable usage by the scientific community—for example, researchers and scientific publishing houses—and usage with potential medical implications.

Scientific community usage

We found 27 groups with 8413 users that were linked with medical/scientific research, research networking and research collaboration. We identified one group that allows users to publish a list of their own Medline indexed citations that interfaced directly with the National Library of Medicine’s PubMed database. Of note, Elsevier have produced an application for social networking sites that allow stakeholders to search the peer reviewed medical literature for the latest advances that are of relevance to them (http://www.facebook.com/apps/application.php?id = 7459082186&ref = s).

Usage with potential medical implications

There were a disproportionately high number of groups in the category related to alcohol (mis)use, with eight groups containing 2234 members. Many of these groups pertained to the encouragement of excess alcohol intake—for example, one group was named “alcoholism is a lifestyle, not a problem.” During the searches we identified a number of examples of areas of concern regarding user groups pertaining to scientific content, patient/carer anxiety generation, confidentiality issues and research ethics.

Discussion

Just as chronic medical conditions exert a significant disease burden in everyday life, they are represented within the Facebook site by a large and diverse group of stakeholders who are using this technology for a number of medically related purposes. The large number of user groups that we identified are facilitating an even larger and more diverse number of stakeholders to form interactions that may not have otherwise taken place.

Although it is not currently possible to estimate the point prevalence and incidence of any conditions among Facebook users, intuitively one might think that it may not be too different from the general population. However, conditions that are more prevalent in younger patients, such as IBD, have a greater representation, likely reflecting user demographics.7 8 9 In particular, for younger patients with chronic diseases, social networking sites are allowing the comparison of experiences, investigations as well as side effects of treatment, in a supportive and readily accessible environment.

Large numbers of national and local charities and other fundraisers are using social networking technology. This is presumably because Facebook is able to provide free and readily accessible advertising among stakeholders and other users in general. Furthermore, individuals performing sponsored events for medical charities can also appeal directly to a wide audience for financial support for their endeavours.

As biomedical research becomes more diverse and complex, interdisciplinary and inter-institutional collaboration is increasingly been seen as a crucial element in successful research outcomes, and Facebook is aiding in the facilitation of this. Moreover, the concept that social networking may be used as a tool to facilitate the efficient identification of appropriate potential scientific collaborators has been validated.10

Of concern were the high numbers of groups associated with promotion of excessive alcohol consumption. This finding may reflect the burgeoning public health issue of alcohol misuse.11

However, despite the widespread use of Facebook for medically relevant applications, during the searches conducted we identified four important areas of concern: scientific content, anxiety generation, patient confidentiality, and research ethics.

Scientific content

While we cannot vouch for the scientific content of any of these groups, as attempts to “score” the scientific content of each group was not undertaken, pointing our patients in the direction of social networking sites may provide them with an opportunity to interact with other stakeholders from across the world. A general overview of these groups would infer that the majority of the scientific content is good, but this was not examined in detail in this study and is by no means a universal observation.

Anxiety generation

As previously mentioned, users may “compare notes” on investigative strategies and treatments, which in itself may cause a great deal of consternation among users as patients are individuals with differing stages and severity of disease. Couple this with differing international, national and local protocols for investigating and managing diseases, it is not surprising that anxiety may ensue. Users themselves may only ameliorate such anxiety by understanding that social networking sites are not physician/healthcare professional substitutes.

Main messages

  • Social networking sites are facilitating communication between a large number of patients, carers and healthcare professionals.

  • There are a considerable number of users groups that pertain to patient groups, support groups and charity/fundraising groups.

  • Fundraising is taking place via support groups, charities and individuals.

  • The scientific community is using social networking websites to disseminate the results of research to healthcare professionals and stakeholders.

  • Research “networking” is taking place among scientific users, facilitating the exchange of ideas and collaborations between research groups.

Current research questions

  • How can research ethics be “policed” on social networking sites?

  • How can we develop peer review of the scientific content of social networking sites?

  • Can we develop and integrate social networking sites into undergraduate medical curriculum? This may allow the student direct access to a specific group of patients and their carers.

  • How can we develop further research “networking” within the scientific community?

  • The need to formally assess the potential impact on users of loss of confidentiality.

  • How can we develop, in conjunction with closer collaboration with social networking site operators, enhanced search tools for the scientific community to assess more accurately the prevalence of disease(s) among users?

Confidentiality issues

The popular media has highlighted the pitfalls of identity theft and confidentiality issues regarding the use social networking sites (http://www.bbc.co.uk/consumer/tv_and_radio/watchdog/reports/internet/internet_20071024.shtml). By their very nature, groups may cause users to “surrender” their confidentiality, although to what degree is decided by the user themselves. Furthermore, recent public attention has focused on unwanted solicitation and sexual harassment, especially with respect to minors, although Ybarra et al concluded that this is not necessarily justified.12 Moreover, Kidd warns that the way health details are being divulged on social networking sites should alarm advocates of privacy.13 In this respect, concerns have been very recently raised as Facebook Inc proposed changing its terms of use governing the long term “ownership” of any data posted on the website. These proposed changes caused a maelstrom of opposition from consumer and civil liberty groups, so much so that Facebook has now indicated it will revert to its original terms of use (http://news.bbc.oc.uk/1/hi/technology/7898164.stm). In light of these concerns, we must advise our patients, in the strongest of terms, on the non-disclosure of personal details such as date of birth and postal address.

Research ethics on social networking sites

Social networking sites may provide a fertile canvas for subject recruitment for medical research, particularly in a younger population, a group in which social networking site usage is thought be highest (A Wessels, Bite Communications, on behalf of Facebook, personal communication, 2008). However, this potential fertility must be tempered with proper research ethics and the principles of informed consent must be upheld. Moreover, research based around recruitment from social networking sites will, somewhat inevitably, introduce the potential confounders of response and recruitment bias. However, certain groups such as adolescents, who are often “difficult to reach” through conventional means of recruitment, may now become more accessible to the researcher. Whether informed consent for research needs to include permission from the specific social networking sites is controversial. Moreno et al comment that some researchers feel that this would be akin to contacting individual telephone companies for permission to perform a random digit dial survey.14 However, we must be ever mindful of the fact that utilising social networking sites for research purposes must conform to the Declaration of Helsinki and other internationally agreed protocols on ethical research.15

Study limitations

The methods that we utilised to search Facebook is confounded by the fact that a single user may be a member of multiple groups and that not all stakeholders are necessarily members of all the user groups on offer. Indeed, given the intrinsic dynamic variability of social networking technology, individual members and groups may fluctuate rapidly. However, due to the limited manner in which searches of the Facebook site can be undertaken, the methodological approach that we adopted is not unreasonable, but the data should be interpreted in light of this. We chose to search for only non-communicable disease, so no assumptions can be made with respect to communicable diseases. Additionally, Facebook is available in a number of different languages and we only conducted the searches using English language terms. Given these methodological difficulties, the results that we have presented are therefore likely to represent an underestimate of the true usage of Facebook in terms of medical applications.

Conclusions

Facebook is providing a readily accessible portal for a large number of patients, carers and healthcare professionals to share their experiences of investigation, diagnosis and management of disease. Furthermore, this technology is being used for research networking, dissemination of research findings, education and fundraising. While it is our responsibility to embrace and understand this new technology, we must have the presence of mind to be aware of its limitations, pitfalls and dangers, particularly in terms of its scientific content, patient/carer anxiety, confidentiality, and research ethics. Further research is warranted to explore the further potential of this new technology.

Acknowledgments

We are indebted to Ms Adrie Wessells, Account Manager at Bite Communications, on behalf of Facebook Inc, who provided us with the demographic data of UK Facebook users.

REFERENCES

Footnotes

  • Funding ADF is supported by the Medical Research Council

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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