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Practical Collaborative Document Writing for Patient Communities

I have a lot of experience with collaborative document writing, and now, in my role with Cautious Patient Foundation, I have been providing technical help to several patient communities. I helped write the security standards for the NWHIN Direct project and I am currently working with the e-patient/QS community to create a document detailing Doctor friendly Quants and Quant friendly Doctors.

My advice is pretty simple:

  • Use a forum, either a facebook thread or a mailing list to determine who the primary authors should be, and what the general content of the document should be.
  • If you have several authors, use Google Docs or a Wiki for initial document creation. If you are writing alone, use whatever you want as your initial author tool.
  • Once you and your co-authors feel OK about the resulting document, copy it over to co-ment.com, and allow your entire community to comment on it. (For Geeks: Co-ment is the successor to the stet project which was used to coordinate comments on the GPLv3.) There is a free version of co-ment but the service is cheap and probably worth it. It allows a community to comment on specific parts of a document, and it will automatically generate a “heat-map” of the more controversial parts of the document.  These are the areas that you will need to spend time with, ensuring that you have blessing of your community.
  • When the comments stop coming in, the document is done.
  • Keep your document as short and concise as possible. All of us operating in the various patient communities are short on time, and by keeping what you are asking us to read short, you are respecting that.

The insight here is that while a wiki makes it easy to update and maintain documents, they are not always the right tool for building consensus in a community. What you want is to have your documents reflect the will of your community at large, rather than the will of the most obsessive wiki-editor in your community.

Fred Trotter is a hacktivist and works for social change by coding and promoting Open Source (FOSS) Health Software. In recognition of his role within the Open Source Health Informatics community, he was the only Open Source representative invited  to testify on the definition of ‘meaningful use’ under ARRA. Trotter also represented the Open Source EHR community in negotiations with CCHIT, the leading EHR certification body. He blogs at Fred Trotter.

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