Gruen, who chaired the Government 2.0 Taskforce, argues that there are many barriers to the health sector making greater and better use of Web 2.0, and suggests that it’s time for some innovation in this space, particularly from the primary health care and public health sectors.
Below is a roughly edited transcript of our conversation today, in preparation for the panel discussion:
Nicholas Gruen: It has become de rigueur to say the internet is a revolutionary medium. But the only revolution so far is in media and there are plenty of other things that it could be revolutionising – eg finance, health and education.
These are areas where the internet could be doing incredible acts of social creation and disintermediation. Disintermediation is what blogs do between a columnist and their reader. This relationship used to have to be intermediated by a newspaper. So disintermediation is a big idea in commerce and economics – ie cutting out the middleman.
But this isn’t just a cost reducing option of cutting out the middleman.
It’s an incredibly profound set of possibilities in terms of connecting people with a common interest or a common condition.
Probably the most powerful web 2 thing in health is Patients Like Me.
It enables people to identify their symptoms and their disease and go into a data rich environment in which they keep a record of their medications and can also be put in touch with all sorts of people with similar conditions. This creates obvious human social benefits, which has been done on the net before but it also creates a completely alternative set of possibilities.
Clinical trials are now being done based on Patients Like Me, patients are improvising with new treatments. Others may look at that with horror, I don’t, particularly if the patients are terminal.
The pipeline for drugs is now hopelessly dysfunctional in almost as many ways as you can imagine.
Q: A recent report suggested patients were identifying concerns about the diabetes drug Avandia in their online conversations before researchers did. Is this an area where the internet could be put to greater use in health?
Nicholas Gruen: Absolutely. I was doing some work for a major drug company several years ago. I said, start user groups on your drugs. If you don’t, someone else will. This will generate some value for your clients/customers and they will generate value for you.
But there are many barriers to the wider use of the internet: regulation, professional practices, privacy concerns, intellectual property, legal issues, and “organisational pathologies”.
Some of these barriers are well intentioned and some are not. But they all have this capacity to freeze things.
For example, a good commercial reason why this company wouldn’t set up its own user groups is if something goes wrong with a drug in a few years’ time, someone will be able to find a comment on one of their user groups. It’s not an effective defence in a court of law to say, we’re in the top quartile of firms trying to do something about safety.
I’m sympathetic to the basic idea of privacy. But you can’t get anything like the benefits you need without risking some privacy events. If we release a whole lot of data, people will be able to snoop around in the data and breach privacy. The privacy legislation permits that type of thing because it talks about balancing costs and benefits. But the way it is implemented is by simple rules of thumb by practitioners.
The idea of the anticommons, coined by Michael Heller (which Wikipedia describes as a coordination breakdown where the existence of numerous rights holders frustrates achieving a socially desirable outcome), is relevant. He noticed that in Russia after communism, the department stores fell empty and little stalls popped up outside. The reason was that the property regime was so complicated that you couldn’t get anywhere. That’s the situation that we’re in with a lot of areas, eg finance, health, education.
Q: How can we move beyond that?
Nicholas Gruen: My strategy in all these situations is to be persistent, stay positive and point to the enormous benefits from the low hanging fruit. It’s like having had a monoculture for a long time and someone suggests crop rotation or growing a new species. There are massive benefits from lightening up in some of these areas.
Each barrier is almost insurmountable at the same time as we have incredibly exciting thing happening with the internet and openness.
Q: How could we transform the debate around health so, for example, there is a greater focus on primary health care and preventative health?
Nicholas Gruen: They could start by trying to colonise the mobile space. There are lots of apps now, which will track your activity, for example, put you in touch with other people who are diabetic. There are sites where people can pose social challenges – for example, not to drink soft drink for a month. The evidence we have suggests that is pretty effective.
Governments and health services could do a mashup apps competition. With apps for expecting families, for example.
You could nominate yourself, in a moment of hubris, as a world centre for the development of mobile apps based on primary care and preventive health. And make available decent sized prizes to get a whole lot of activity going. It’s a shake up process. It’s about shaking up, not driving top down. It’s just social activity.
People will do this in small ways and then it will get taken up.
Mark Scott set up ABC Open. Maybe some health authorities should spend a bit of money on a whole lot of experiments.
NZ police had $12,000 to do consultation on a new police Act. They put the draft up on a wiki and got publicity all around the world.
Just about anything you do in this area, you’re a world leader.