In the late 90s I was involved in the creation of Audi's first website. It was one of the last car companies to launch online, and far from welcoming it as a sales tool that would draw in customers, dealers worried that Audi was seeking to disintermediate them - cutting them out to sell direct.
Arguments raged about how much information we could put on the site, and particularly about whether prices could be included - even though list prices were published in all the car magazines. It turned out that visitors to dealerships were better customers if they were better-informed; there were fewer tyre kickers, and a higher conversion rate from visitor to buyer.
Dealers noticed that customers were coming into showrooms with more specific questions; their research meant they were further down the purchase funnel, more qualified as prospects and provided a challenge for dealers to be better informed to meet their demands.
Far from replacing the dealer, the web altered the balance of knowledge between buyer and seller, and enabled a change in behaviour that improved the outcome for both parties.
This transformation of the knowledge gap is having far-reaching consequences, in commerce and elsewhere.
PatientsLikeMe.com is a social network that enables people to share information about medical conditions, their care and treatment outcomes. It allows patients to seek out not only people who suffer from the same condition, but also those with a similar profile in terms of age, gender and the time that has elapsed since diagnosis. In this way, patients begin to support each other, and to learn more about their disease.
A user starts by identifying the condition, adding further specifications. The page shows how many people fit these criteria, allowing the ranges to be expanded as appropriate. Users can then drill into individual profiles and share detailed information about the progress of their symptoms, drugs and other treatments taken; data which is presented graphically back to them, and to anyone who wants to look at it.
Now, they can track their progress over time and compare it with similar sufferers. Thus they can appraise the effectiveness of different therapies and search by treatment or symptom.
So, if my doctor suggested I take Tramadol, I can see its effect on the 1192 others on the site who are taking it, looking at efficacy, side effects and patient tips, such as how to withdraw from it.
For years, healthcare providers in the UK have pursued shared care strategies, where the patient and professional are seen in equal partnership in addressing the condition. While generally accepted as a significant improvement on the old 'top-down' philosophy of healthcare (where being, as my grandmother put it, 'under the doctor' meant one was expected to do as one was told), shared care still faces the challenge that patients don't necessarily have easy access to peer-generated information.
PatientsLikeMe is addressing this, while providing valuable data that it sells back in anonymous form to pharmaceutical companies and other interested businesses. It is even joining with pharma companies to create specific communities, such as a partnership with UCB on epilepsy. It believes the development of therapies has been slowed by a lack of transparency in healthcare, and progress will be accelerated by greater availability of data.
In this way, PatientsLikeMe inverts the conventional approach of confidentiality, replacing it with openness, but still respecting individual privacy.
Audi and big pharma couldn't be more different businesses, but their experience is a common one - better-informed consumers may change the balance of knowledge, but the potential benefit is for both parties.
Andrew Walmsley is co-founder of i-level.
30 SECONDS ON ... PatientsLikeMe.com
- PatientsLikeMe.com was founded in 2004 by three engineering graduates from the Massachusetts Institute of Technology - brothers Jamie and Ben Heywood, and their friend Jeff Cole.
- The site grew from the efforts of the Heywood family to care for another brother, Stephen, who was diagnosed with the neurodegenerative disease amyotrophic lateral sclerosis (ALS). The family began researching his condition and looking for ideas that would improve and extend his life.
- PatientsLikeMe.com extends this approach to a range of 'life-changing' conditions and offers a platform for collecting and sharing user data.
- The conditions covered include ALS, multiple sclerosis, Parkinson's disease, HIV, fibromyalgia, chronic fatigue syndrome, and mood disorders such as OCD, anxiety and depression, as well as some rarer conditions. The site plans to extend the list of conditions further.
- In 2007, PatientsLikeMe was named as one of '15 companies that will change the world' by CNN Money.com.