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Video: ADHD Allies Facebook Page, Tricia Geoghegan How Smartphones Are Changing Health Care for Consumers and Providers
Apr 27

On April 15, online community service, Ning, announced deep layoffs and that their free services would be discontinued. Community leaders would be forced to pay up or be shut down. Ning’s decision has the potential to affect 626 different cancer communities, 33 ADHD groups, over 100 communities dedicated to autism, and over 2,600 health related sites. Many of these communities have thousands of individual members and years’ worth of posts, messages and of course valuable member relationships.

What makes the Ning announcement so startling-besides the massive impact it will have on the patient communities-is that Ning was a poster-child for Web 2.0 success. They were founded by Marc Andreessen, raised $75 million in venture capital with a valuation just last year of $750 million, and were celebrated by Fast Company and many others. They used the popular “freemium” model to entice thousands of individuals and organizations to create their own online communities, many focused on health and patient-related topics.

Ning, like every business, has every right of course to do what they must to turn a profit to ensure their survival. And in fact their monthly fees to keep these communities alive may turn out to be very modest. But there are valuable lessons that health advocates and communicators can learn from the Ning experience. The big questions are:

Who really controls your community?

What happens if the entire platform shuts down?

What happens if your vendor goes out of business or refuses to work with you in the future?

If you build your community on a third party platform you really don’t control your community. You have risk tied to the company’s ability to stay in business and their terms of service. Even if you are building a group on Facebook, while it may be unlikely that they will go out of business, it possible that they will change their terms of service or functionality in ways that will impact your community.

If you hire an agency to build your own private online community, your risk is related to the agency staying in business and their willingness to work with you in the future. (Yes, agencies do fire clients from time to time.)

Online community managers are really software-as-service buyers

Many patient community managers don’t realize that they are really “software as service” (SaS) buyers. To minimize risks you can follow these steps that professional IT buyers take when selecting a SaS partner:

1)      Check out the financial viability of your vendor. Are they profitable? Feel free to ask for quarterly financial summaries to monitor the vendor’s health on an ongoing basis.

2)      Have a clear migration plan in advance for how to export or “take” your community data with you in the event of a crisis. Are there tools in place to export member profile information? What about the messages and activity? What about linkages between members?

3)      If you are using a vendor to build a private community are they using proprietary code that others will find difficult to maintain? It might be better if they use open source tools (e.g., Drupal) that has a strong vendor community behind it.

4)      Be clear on who owns and controls the software source code. If your community was built as “work for hire” then you own the code and you should have a backup copy for safe keeping. If you are licensing tools or using a platform you can still negotiate to have a copy of code in escrow so that you can access it in the event of a business default or contract breach.

With a proliferation of Web 2.0 tools and third-party community platforms, online patient communities can be created quickly and cheaply. But before you rush into this type of initiative, realize that you are making a long term commitment to your members and must choose your platform and vendor carefully.

  • Kirk Murtha

    Inspire.com is a great choice for health non-profits looking to create a safe place for patients to connect.

  • CaringBridge.org is a great alternative to online patient groups. Patients can create their own free website on CaringBridge.org to stay connected with family and friends. There is a journal to post health news and a guestbook for visitors to post messages of support. CaringBridge has been providing this service since 1997.

  • Guest

    Thanks for this informative post. Ning was my top platform of choice for our implantable cardioverter defibrillator (ICD) patient group in California, the ICD User Group. Now I am leaning toward using vBulletin. It is not exactly "open source", but the source code can be seen and customized.

    Does anyone have any thoughts on this?
    Hugo
    http://icdusergroup.org

  • Patient Groups and other charities can set up free groups on www.healthunlocked.com, which was started by doctors to provides a variety of widgets and web tools for Patient Groups and their members

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