2010 Update: Patients & Caregivers Editor's Report

March 17, 2010

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By Daniel Hoch, PhD, MD, Editor, AAN.com for Patients & Caregivers

The site formerly known as TheBrainMatters.org has seen many changes this year. In order to provide a single portal to all of the online resources of the American Academy of Neurology, we created an entry page, the main AAN.com, which takes the visitor to either the Members & Professionals site or the website devoted to Patient & Caregivers. The name of the patients' site was also changed to AAN.com for Patients & Caregivers. A second initiative that is underway is to bring disorder-based communities to both the professional and patient sites. Since the focus of my efforts has been on site architecture instead of content, I did not form an editorial board this year. However, now that the structure of the site is well developed, I am in the process of establishing an editorial team, and will also form an advisory board composed of neurology patient advocates.

Features

When the Academy's first patient site was launched as TheBrainMatters.org, we included many features that continue to be an important part of AAN.com for Patients & Caregivers. First, AAN.com made arrangements with the National Institute of Neurologic Disorders and Stroke (NINDS) to provide disorder-specific information to our visitors to the patients’ site. In addition to offering excellent information, these pages include links to support groups and advocacy organizations relevant to each disorder. We also augmented the material by linking each disorder to as many existing Academy resources as possible. I was particularly impressed by the large number of Neurology Now® articles, as well as the wealth of informative press releases, that we could associate with the NINDS information.

Fund Raising

TheBrainMatters.org was privileged to take advantage of a wonderful opportunity to help fund neurology research. Last spring, the popular television program "Grey's Anatomy" identified the AAN Foundation as one of its favorite charities on the "wedding registry" of two of the principal characters. A link to the "Buy a Brain" tool was used to encourage donations to support the work of the Foundation at the time of the show, and continues to serve as an important way to donate to the Foundation.

Feedback

The "Contact Us" feature has been used modestly by our visitors. While I’ve tried to reply to every email, I am unable to give specific advice on conditions and disorders. I’ve appreciated the many  suggestions for improvement of the website. Many people noted the inadequacy of our "Find a Neurologist" tool to identify subspecialty interests and to filter the choices in large cities. We also learned that a number of important disorders are not found in the NINDS literature: Problems such as vertigo and a number of other common symptom-related disorders are not well covered. We hope to be able to address these concerns with future enhancements.

The Future

I have asked several members of the Academy to join an editorial board to guide the next set of changes to the Patients and Caregivers site. They each have strong advocacy records and have been very active in seeing neurology from the patients' perspective. In addition, I have started a conversation with the moderators of a large, online neurology community to recruit members of a patient advisory board. Expanding the viewpoints and variety of opinion about the site will be helpful and exciting.

I have asked our excellent AAN staff and the Membership section to add member subspecialty interests to the member profiles to improve the "Find a Neurologist" function. This will go a long way toward making this tool more useful to our patients, and ultimately to our members.

The biggest change coming this year to both the members and patient/caregiver sites will be the launch of communities. On the Patients and Caregivers side, we will be creating a resource page for each of the disorders of interest to visitors to the site, based in part on the NINDS list, and in part on the needs of the visitors. Each community home page will have links to important content about the disorder or topic of interest to the community, and will include a threaded discussion board, a chat room and other resources. We hope to add a blog and wiki so that visitors can not only read forum posts and converse with each other, but also create new content of importance to the group. I have spent significant time at large online forums devoted to neurologic illness in order to find out what new value the AAN may be able to bring to this area. Some of the best ideas are that the AAN can add value by:

  1. Serving as host for a stable, well-supported forum
  2. Drawing patients and caregivers into conversation with neurologists

The next year promises to be another one of exciting new developments for AAN.com for Patients & Caregivers. I am looking forward to working with a new board of editors and advisors to expand our resources and develop community.

Author Disclosure

Within the past 24 months, Dr. Hoch has received personal compensation for his role as consultant editor for A.D.A.M. Inc. He has also served on the editorial boards of the Journal of Participatory Medicine and AAN.com in the same period. His spouse owns stock in Merck, Inc, and Biogen valued at more than $10,000. Dr. Hoch has also served as chart reviewer and expert witness in criminal proceedings at the request of the District Attorney, Essex County, MA.