Using Online Communities to Discuss Health Care and Reform

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Using Online Communities to Discuss Health Care and Reform

By Caryn Sever

 Over the last five years, the social networking phenomenon has swept the globe. Users have direct access, in live time to most people who participate in these online communities. It is not surprising then, that many have taken to the web with information and questions about health care, disease, insurance, and reform.

For years people have been scouring the Internet to find communities of like minded individuals. Online message boards and forums were some of the first online communities and social networking avenues. Internet forums were created as early of the 1970s as a virtual bulletin board for people who were beta users and experimenters of the “World Wide Web”. By 1994 web-based Internet forums connected users on topics from gaming to politics and everything in between. Members of these forums were able to post “threads” or messages about a particular subject and respond to the posts. “Lurkers” or those who simply read the posts and responses could generally do so anonymously without signing up to a public forum.[1] Today, the basic structure of social networking is quite similar.

As of 2011, over two billion people across the globe use the Internet with over six million people participating in online message boards or Internet forums,  600 million visitors a month on Twitter and 800 million active users on Facebook. These forums provide a safe, social networking structure to those who are seeking answers or simply reaching out to share ideas, hopes, dreams, and build online friendships. One may ask: where does Health Reform fit into the conversation? For several years, online forums have helped patients seek answers to important health related information, including health insurance coverage, and disease management. These discussions also allow patients, care givers, insurance providers, and policy maker’s direct access to each other.

Dr. Priya Nambisan, an Assistant Professor of Health Informatics and Healthcare Management in George Mason University’s, College of Health and Human Services, Health Administration and Policy, conducted a study in 2011 about social and informational support in online communities. Her article: “Information seeking and social support in online health communities: impact on patients’  perceived empathy”discusses the social, emotional, and informational support of these communities as they communicated through message boards. Dr. Nambisan used a sample group of participants in online communities set up by Health Care Organizations (HCOs).  The objective of the study was to test “the impact of two variables that reflect the functions of online health communities” 1) the informational support and 2) the social support. The research particularly measured the function of homophilous relationships among patients.[1]  Dr. Nambisan describes the concept of perceived empathy as “empathy perceived by patients in an online health community based on their interactions and discourse with other” and believes that is can be “critical to the outcome of online communities”. [2]Among many attributes, these online communities serve two major purposes: as an informational seeking forum or as a social support forum. Nambisan’s study indicated that, between the two, effectiveness of information seeking had a greater impact on patient’s perceived empathy than the social support received from these forums. [3] Given this outcome, Dr. Nambisan’s model proves the need for an online information exchange regarding health care and reform.

 Several bloggers have also addressed this topic in a variety of ways. The Health Care Blog posted a story titled: The slow integration of community into healthcare on January 3, 2012 outlining successful trials of online communities of patients conducted by Geisinger with dLife, Aetna with MindBloom , OneRecovery, and DiabeticConnect an Alliance Health community with the Joslin Diabetes Center . These programs offer innovative, interactive communities for patients. dLife is a free online social community for diabetics that include recipes, forums, and blood sugar management tips. DiabeticConnect provides discussion forums, news, and other helpful information for diabetics. OneRecovery  is a free social media and message board site for an anonymous community to come together and talk about their addiction online.  LifeGame by MindBloom,  is a game designed to track and motivate users to adopt a healthy life style in a fun way. The interface is a life tree the user grows while they track all aspects of their life including: relationships, health, spirituality, etc. and receive motivators such as actions they can take and motivational quotes.

Another writer for The Health Care Blog, David Harlow explains the importance of social media use for hospitals, health care providers, as well as its inclusion in health care reform, in his article Health Care Social Media – How to Engage Online Without Getting Into Trouble, posted on January 3, 2012.  He clearly notes the dangers of social media in the health care world and, in some case how to address them.  As far a health care reform is concerned, Harlow submits that reform itself is “pushing providers into social media”. [5]  The reason: the Meaningful Use regulations that will require providers to adopt electronic health records and make “greater use of personal health record portals”.[6] Furthermore, ACOs will require regular patient engagement which is generally best implemented at this point, through social networking. Harlow’s article is similar to one posted by Daniel Palestrant  on August 22, 2009, titled Can Social Media Save Healthcare Reform. The general consensus is the overwhelming need for direct access; access from providers to patients, providers to and from policy makers and, policy makers and reformers to and from citizens.

In 2009, the White House addressed this need for direct access by developing a website called “Health Insurance Reform Reality Check” as an effort to dispel rumors about Health Care reform. The site features videos of real people talking about real health reform. President Barak Obama believes “Whether or not you have health insurance right now, the reforms we seek will bring stability and security that you don’t have today. This isn’t about politics. This is about people’s lives. This is about people’s businesses. This is about our future.”[7] This site is a demonstration of how social media can be used as a grassroots method to disseminate information about Health Reform.

What is CHPRE Doing?

The Center for Health Policy Research and Ethics believes that it is imperative to participate as active members of the online community. We will do this through a variety of ways. Our website (http://chpre.gmu.edu) is designed specifically for community interaction.
We believe 
that it is important to establish a dialogue and a connection with real
people as well as policymakers,  providers, and healthcare professionals. CHPRE will launch a video blog featuring Len M. Nichols in February 2012. This blog will address current health care and reform issues in 3 - 5 minute video segments. We will offer the online community a chance to comment and discuss these issues. We will begin a twitter chat, where followers can ask Len M. Nichols and CHPRE staff members about health care and reform in live time. Len is also is the founding Editor-in-Chief of the online Community on Payment Innovation , a joint project of the American College of Cardiology and the American Journal of Managed Care, which provides timely content and aims to foster interactive discussion among clinicians, payers, patients, and policy makers about emerging incentive structures and their implications. CHPRE’s website also features a survey section called Question of the Month which we update monthly where visitors can vote, post comments, and discuss issues on our website. Finally, CHPRE maintains an active Facebook page where students, professionals, and friends can post and discuss online. Through these forms of social networking, and interactive online communication, CHPRE plans to reach out to the public in more viral ways. This will allow more access and discussion across the board.

 

For more information or links to online community boards, click the below links:

Dr. Nambisan’s Paper

Information seeking and social support in online health communities: impact on patients’ perceived empathy

The White House Health Insurance Website

Health Insurance Reform Reality Check

Internet Forums:

HealthBoards: Health Message Boards

PsychForums

Benefits Link Message Boards

There is also a social networking site developed specifically for Employers, insurers, and agent employees called The Employer Health Care Network

 


[2]Nambisan, P.(2011).Health information seeking and social support in online health communities:Impact on patients’ perceived empathy. Journal of the American Medical Informatics Association,JAMIA, 18(3):298-304
[3] Ibid.
[4] Ibid.
[6] Ibid


1 Comment for “Using Online Communities to Discuss Health Care and Reform”

  1. An impressive share, I just given this onto a colleague who was doing a little analysis on this. And he in fact bought me breakfast because I found it for him.. smile. So let me reword that: Thnx for the treat! But yeah Thnkx for spending the time to discuss this, I feel strongly about it and love reading more on this topic. If possible, as you become expertise, would you mind updating your blog with more details? It is highly helpful for me. Big thumb up for this blog post!

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