Pinn illsutration

Can the grassroots internet do for health what it is doing for politics?

America’s political culture has been revitalised in recent years as citizens have become newly vocal and engaged, in large part through the web. The internet gives all of us the ability to get involved, whether by signing up to a presidential candidate’s mailing list, participating in local politics through blogs or even just sharing photos and interests on social networking sites.

Whatever happens with President Barack Obama’s plans for healthcare reform, the same thing is starting to happen in the field of health itself – that is, that happy state in which you do not need much from the medical system. Remember: “That government is best, which governs least”?

Indeed, healthcare is ripe for the kind of revolution we are having in politics, due both to a backlash against the dysfunctionality of the old system and to the power that the internet gives people to collect information and organise themselves.

The internet is changing people’s expectations of what they have a right to know and say: just as they expect to know more about their politicians, they expect to know more about their own health institutions – and to criticise them publicly. Websites let people rate their own doctors and hospitals, even as public pressure and occasionally public rules demand more and more transparency about performance and outcomes.

With these resources, people are taking a more active role in their own health. Instead of relying on the medical establishment, they are searching for information on the internet in order to do for themselves what institutions cannot or do not.

They are using online tools to generate and manage information about themselves. Health and healthcare are personal in a way that politics is not. Following the lead of diabetics and others with chronic diseases who monitor themselves and share data on sites such as PatientsLikeMe, healthy people are monitoring their own blood pressure, exercise and other data.

If this sounds bizarre, remember that just a few years ago it would have seemed odd to “manage” your friendships online; now that is taken for granted. People create and share user-generated content; why not collect and share user-generated data?

Hundreds of start-ups, not to mention Google and Microsoft, are developing tools and services to let individuals manage their own health information, even as the government encourages institutions to make all health data electronic.

But those medical institutions are talking about electronic medical records for their own use; the patients are perceived as subjects of the data, not owners. HealthDataRights.org is a website where people can sign up to assert their rights to their own health data. That sounds obvious, but have you tried getting your own records lately? More specifically, in some US states (New York and California), there are regulations that prevent you from seeing your own genetic data without a doctor’s involvement.

From the public-health point of view, all this is meaningful only if it can affect behaviour and, in turn, result in a healthier population overall. The establishment is sceptical, but consider how attitudes and behaviour have changed on smoking. Consider the impact of community support (Alcoholics Anonymous, for example) on the behaviour of people who recognise they have a problem.

We have only begun to see how good information – and specific, personal, quantifiable information – can affect people’s behaviour. It is hard to eat and exercise right if you cannot see the impact. But better information and modelling tools can shed light on how, for example, a particular diet might make you look and feel years from now. Data on blood pressure trends, meanwhile, can have an immediate impact on behaviour.

Not everyone will become a “self-quantifier”, but the choices of those who do will shape overall consumer consciousness and, in turn, the products and services offered by restaurants and food companies, the popularity of gyms and exercise overall, and the role models we emulate.

Ultimately, of course, individual involvement can have an impact on the healthcare system too. Whatever Congress decides about funding and restructuring healthcare, increasingly informed individuals will make better choices about doctors, treatments and hospitals – providing market-style feedback that has been lacking in the system until now.

Doctors are horrified that they could be chosen in the same way someone would choose a restaurant – but why not? We pick a restaurant for a variety of reasons, even as we rely on government inspection to make sure the food is safe. It is now up to the medical establishment to start presenting information in a way that is truthful, relevant and intelligible. It is not beyond the capacity of the public to understand that hospitals treating sicker patients might have worse outcomes, so that you need to concentrate on the relative outcomes. If people can understand baseball statistics, they can understand that a 30 per cent chance of cancer is neither a death sentence nor a licence to avoid screening.

Real improvement in the healthcare system depends only partly on who pays. It also has to do with who makes the choices – and whether they have enough information and incentives to do so wisely. In the end, all politics is local. And health begins at home.

The writer is involved with a number of “health 2.0” organisations, including 23andMe, PatientsLikeMe, Patients-KnowBest, ReliefInsite, Keas, Epernicus, HealthDataRights.org and the Personal Genome Project, for which she has published her entire genome online

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