Building a responsible online community for pulmonary fibrosis: real names won’t cut it here

September 21, 2011 | 3 comments

In my spare time, I’m building an independent community for idiopathic pulmonary fibrosis (IPF) researchers, doctors, sufferers and their families. IPF is a degenerative lung disease which builds up scar tissue over time, restricting the patient’s ability to breathe. It’s generally fatal and has no cure. My idea is to promote the discussion of the facts behind the illness, and approaches that have worked for different people. (Even things like, what’s the best oxygen generator?)

My aim is to release the community this Saturday, to sit in line with Pulmonary Fibrosis Awareness Week (which is all this week), but I’m rebooting it, and my day job requires significant attention, so there’s a good chance it may slip. It’ll be ready when it’s ready – but I wish I could put it out there today.

Obviously, it needs to be easy to use, even for very non-technical people. It has to be accessible, work on older browsers, take a very short amount of time to participate in, and so on. I have one big ground rule, which has been hard to fulfill with existing platforms:

An identity spectrum.

On one side of the coin, medical insurance in the US is a mess, and I don’t want participation in the community to adversely affect anyone’s ability to get medical attention. For this reason, pseudonyms should be allowed. Furthermore, while passwords are generally hashed so that nobody can gain access to them, I want to do this with email addresses. Because most people like to email the heck out of their users, nothing out there supports this.

On the other side of the coin, the doctors and researchers involved in the community need to be trusted – so I think verified identities are good idea, with a simple, manual, offline verification procedure.

In other words, users have control over how much or how little they share. If they want to receive email updates, they understand that their email address will be stored on the community servers; otherwise it won’t be. On the other side, if they want to publicly verify that they are, indeed, who they say they are, that’s fine too. And somewhere in the middle, people can choose to share selected information about themselves, either publicly or to other users.

This is very different to the work I do for my day job, or the decentralized social web I often advocate for. Privacy, choice over identity and the ability to feel protected when (literally) talking about matters of life and death are important.

I will, of course, make my work available to the community.

NB: this was originally published over on Google+, and there’s a great conversation developing over there.

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3 Comments

  1. We – as in we the people of this world – really need a platform like this for general use. I’ve been drawing out plenty of ideas, both in terms of stack, design, and philosophy in order to create such a platform, that emphasizes the ability to remain anonymous, powerful privacy/permissions/sharing tools, built to be deployed in a decentralized fashion. I’d love to chat about what you’ve got in mind and maybe collaborate!

    Robert September 21, 2011 (6:38 pm)
  2. Having suffered a TBI myself, I know how difficult and frustrating it can be for yourself and for your loved ones to help you recover and get your life back. I tried building a community on Meetup for TBI survivors called batbig (short for Bay Area TBI Gettogethers) but needless to say, didn’t go so well. I’m curious to hear how you are planning your community?
    END Brain Pickings.
    googol thanks! All the best.
    Sian

    Sian September 21, 2011 (7:47 pm)
  3. I hope that you will include an emphasis on having PF patients, family members, caregivers, treating physicians and researchers work to support passage of The Pulmonary Fibrosis Research Enhancement Act (PFREA) – HR 2505 and S. 1350 in the current Congress. These bills would provide funding for a national PF patient surveillance registry (database) that would make a real and positive difference in PF research. 32 bi-partisan Members of Congress have signed on to these bills since they were introduced on 07-12-11. We need a LOT of help to get sufficient suppport to pass the legislation.

    Paul Fogelberg September 23, 2011 (4:44 pm)

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