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.

Public IT project hell: let’s make government work for us

December 3, 2009 | 1 comment

Why does it cost $235 million to integrate a few IT systems?

Johannes Ernst contrasts the Yahoo/Facebook deep integration announcement with the US government’s announcement that they will spend $235 million on integrating incompatible healthcare IT systems, and asks some pertinent questions:

I assume we all agree that an environment in which leading-edge companies innovate on their own to the benefit of their customers is better than one in which the government has to spend large amounts of money to drag along kicking and screaming “participants” — as it is so common in health IT. How do we turn US healthcare IT from the latter to the former?

One might equally substitute education, or local councils, or law enforcement. It’s a widely-accepted truth that public IT endeavors suck, and that enforcing data standards across disparate public bodies is like herding confused, angry cats into a very wet bag. It’s also true that commercial web services have been very good at integrating for the good of their customers, often without any money (let alone $235 million) changing hands.

I do think there’s a false distinction that’s been made here: public bodies and government departments tend to be swamped in a sea of bureaucracy that prevents them from moving or changing as nimbly as many commercial companies. (Of course, as companies begin to become institutionalized through age and size, they also become less nimble: take Microsoft and IBM.) Many of these restrictions are necessary for the simple reason that they’re using our money, and some regulation is required to ensure tax funds are being spent wisely and benefit the wider public good. We don’t want people to just walk off with it.

Our tax dollars at play

It’s also widely-accepted that our tax dollars are not spent wisely, and often don’t benefit the wider public good. Public bodies are full of inefficiencies, in part because of the bureaucracy involved. I’ve certainly worked within university environments where entire departments of people could reasonably be described as incompetent, but had integrated themselves so well into the system that they had become a required port of call in the bureaucratic workflow. I’ve also seen fully private companies formed using university money and resources earmarked for public research, and government grants essentially spent on beer and travel. These are the kinds of inefficiencies and sanctioned fraud that must be stamped out.

Public bodies and private companies are different in one major respect: their stakeholders. It is a legal requirement for shareholders in a company to have access to the company returns, board minutes and so on (although a wider cloak of privacy is often necessary). In a public body, the stakeholders are the public, yet we often don’t have access to details like financial statements, minutes and decision-making rationale. In Britain, an attempt to get government departments to work like commercial companies has resulted in a ridiculous system where departments must pay each other and the British taxpayer often doesn’t have a legal right to the information they produce.

The public is the board

Ultimately, in a democracy, the public should be the board of directors. Genuine public oversight hasn’t been possible before, but transparency and accountability are now possible via the Internet. We don’t need political parties and administrations to be our eyes and ears any more; we need them to be our hands, and act on our behalf. We need to be able to see the inner workings of public bodies: not just the numbers, but the actual internals and decisions. With genuine public oversight in a way that ensures the bodies know they’re being watched, and governments obligated to maintain these bodies for direct public benefit in a way that’s responsive to the public, costs should go down. It’s not perfect – and Switzerland has recently shown us the dangers of having frequent public referendums – but given the spending, inefficiency and fraud inherent in the system, we can no longer trust the government to do this on our behalf.