Social Networking and Health Information Systems

Shepherdstown 02 November 2008A social network service focuses on building on-line communities of people who share interests and activities, or who are interested in exploring the interests and activities of others. Most social network services are web-based and provide a variety of ways for users to interact using e-mail, wiki's, blogs, on-line forums, instant messaging and other types of communication services.

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Social networking has created new ways to communicate and share information. Social networking web sites are now being used regularly by millions of people and have become a part of everyday life for many people. Early social networking web sites included Classmates.com, focusing on ties with former school mates, and SixDegrees.com. More current examples of social networking web sites include MySpace and Facebook. Social networking has recently began to be a key component of the internet business strategy for most "forward looking" companies. See www.wikipedia.com

This article attempts to pull together relevant information about the development of social networking solutions in health care to date, highlight selected findings and key issues, and offer a set of recommendations to both health care providers and patients.

Major Features

Social networking systems tend to have certain common features such as the ability to:
  • Create groups that share common interests or affiliations
  • Invite others to join a personal group of friends or purge them from your list
  • Upload pictures or stream live videos
  • Interact and share data with "friends"
  • Hold public discussions in forums
  • Create personal profiles to share with others

Other functional components or software applications associated with social networks include:

  • Blogs
  • Wikis
  • Groupware
  • Instant messaging
  • Document sharing
  • Collaboration software
  • Virtual world software
  • Multi-player on-line games

Finally, social networking systems also tend to be categorized as either internal or external social networking systems:

  • Internal social networks are closed or private community that consists of a group of people within a company, association, or organization focused on a particular topic.
  • External social networks are open or public systems available to all web users. They may be smaller specialized communities focused on a particular issue or audience, or they can be larger generic social networking sites.

Social Networking & Healthcare

Social networks are beginning to be adopted by health care organizations as a means to better manage institutional knowledge, disseminate peer to peer knowledge, and to reach out and better serve their patients.

Social-networking technology is allowing advocacy groups, health care providers and government agencies to provide consumers with updated health information and deliver personalized health awareness information.

According to the Wall Street Journal, increased use of social networking and health care blogging has led to the beginning of a movement to establish standards and guidelines for "open media" in health care.

Findings - Selected Examples

The following are some examples of the many social networking web sites that have emerged within the health care space to meet a variety of needs for both health care providers and patients.

Social Networking Sites for Patients

DailyStrength is a new social network that provides a space for people with a wide variety of medical, psychological and life conditions to discuss their struggles and the treatments they are undergoing.

NursesRateDoctors - CareSeek Inc. has launched NursesRateDoctors.com, a social media networking platform, focused on gathering nurse ratings and reviews of doctors. It provides an on-line platform where nurses can anonymously join and provide their insights on physicians resulting in a vast knowledge base of information critical to helping patients seeking a provider.

Rareshare is a social network for people coping with rare diseases like adrenomyeloneuropathy or erythromelalgia.

PatientsLikeMe offers its members the chance to connect with other patients dealing with similar issues and to research health information and data related to their condition.

RealMentalHealth.com was launched in 2006. It was one of the first social networking site focusing on mental health wellness and treatment.

SoberCircle is another web site for alcoholics and addicts that gives people in recovery the ability to communicate with one another and strengthen their recovery through the encouragement of others with like problems.

Trusera is a new social-networking web site centered on health, officially launched in June 2008. The site, which features on-line communities and personalized health information, allows members to endorse one another's contributions, as a way to identify reliable sources of information.

Social Networking Sites for Physicians

TargetRX is about connecting doctors with one another and fostering legitimate medical research into treatment methods with new and existing medications.

Sermo - The American Medical Association (AMA) and Sermo have a collaborative agreement to empower physicians by making their collective voice heard in a new way. The site is aimed at improving medical practice, physician advocacy, and patient care.

MomMD® is an on-line community founded in 1999 for "Women in Medicine". It is a career site with professional and personal support for women physicians, residents, medical and pre-med students.

Mayo Medical School began implementing a web-based social networking system in 2006 as a tool to facilitate interaction between students and faculty mentors. Read more about this at http://www.editlib.org/index.cfm?fuseaction=Reader.ViewAbstract&paper_id=23838

The following is a quick list of other social networking sites for physician and researchers to consider visiting:

Other Specialized Social Networking Sites

My HealtheVet is a personal Health Record (PHR) system developed by the Veterans Health Administration with a focus on health issues or problems facing military veterans, e.g. Agent Orange, PTSD, Prosthetics, etc.

iConecto is positioning itself to be the leading digital media company focused on health and health care that develops, publishes and distributes multimedia video games that support consumer health and professional performance (e.g. Health eGames). The firm specializes in applying interactive video gaming with social media, immersive learning simulations and virtual worlds.

Finally, Dr. Gunther Eysenbach has written an excellent article on "Medicine 2.0" applications, services, and tools. Medicine 2.0 is defined as web-based services for health care consumers, caregivers, patients, health professionals, and biomedical researchers, that use Web 2.0 technologies to enable and facilitate social networking, openness, and collaboration, within and between these user groups. See http://www.jmir.org/2008/3/e22/. Also consider reading "Leveraging Web 2.0 in Government" published in 2008 by IBM - see http://www.businessofgovernment.org/publications/grant_reports/details/index.asp?gid=315

Selected Issues

There are a number of major issues that have surfaced and need to be addressed by organizations as they consider moving forward into the realm of social networking. These include:
  • Privacy & Security - On large social networking services, there have been growing concerns about privacy and users giving out too much personal information. Who has access to this information and what abuses may occur must be considered? When partnering with social network providers, only the most trusted sources should be used.
  • Legal Issues - Corporations moving into social networking may be putting themselves at risk. There are a range of legal and liability issues that must be addressed before moving forward. Corporate policies need to be developed to provide guidance and set some needed boundaries.
  • Education & Research - It is still very early in the game. More research and evaluation of social media environments is needed. The education of potential users about social networking media and instructions and how to take advantage of it should be provided.

Conclusions

Social networking is a relatively new service and the value of using them has not been firmly established. Social networks have the potential for redefining relationships and generating a fundamental shift away from the traditional flow of information in health care currently defined by payers, physicians, hospital systems and pharmaceutical companies. It is clear that we are at the start of a significant shift in demand from both consumers and providers for better information and easier ways to share experiences. Stakeholders in health care will need to carefully adopt and integrate these new technologies and networks into their clinical business strategies for the future.

Recommendations & Next Steps

The following are some recommendations and next steps health care organizations should consider taking with regards to social networking technology and solutions:
  • Consider establishing a work group to identify functional requirements and/or potential uses of social networking technologies for use by your health care organization.
  • Conduct a detailed literature search annually and obtain lessons learned from social networking projects underway at other health care institutions.
  • Identify potential organizations to collaborate with on the research, development, testing and use of social networking systems in health care, e.g. medical schools, vendors, etc.
  • Conduct a feasibility and cost/benefit study into the use of social networking technologies and select potential pilot projects.
  • Carefully review legal and liability issues before developing guiding corporate policies.
  • Put aside any bias against social networking systems and begin to take the first steps forward.

Authors

Peter J. Groen is on the faculty of the Computer & Information Science Department at Shepherd University in West Virginia and is one of the founders of the Shepherd University Research Corporation (SURC) - see www.shepherd.edu/surc/cosi

Jenny Dom is a web developer and graphics designer for the Veterans Health Administration. She is a graduate of the University of South Carolina.


Peter Groen, Jenny Dom

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