By DENISE SILBER
This April 6–7, the Health 2.0 Europe conference will feature the many ways in which Web 2.0 tools are providing innovative solutions to, amongst others, our fundamental need for self-expression, known more recently as “user-generated content”.
Several panels will refer to these issues, but we will focus in this post on the Hospital and Payers’ panel. Payers want to ensure that their patients are being oriented to good care. Hospitals want to know that they are being considered “justly”. The Health 2.0 panel will include demonstrations by Guide Santé (France) and Patient Opinion (UK), both web 2.0 sites created by physicians concerned by patient satisfaction with hospitals and clinics. Payers like the UK NHS and Big-Direkt from Germany will participate in the conversation and Big-Direkt will also demo their new online tools.
Rating sites in health are high profile in France, especially amongst those who are rated and some early entrants have bit the dust for methodological reasons. Rating sites, however are not all identical and they are certainly not alone in capturing the patient experience. They live alongside online story telling or narrative tools, deployed in a variety of ways on sites that will be featured in Paris from a dozen countries.
How did all of this come about?
A quick review of the world of hospital ratings will remind us that consumers and professionals have long been seeking comparative guides to the quality of hospitals. Twenty years ago, US News and World Report launched its “best hospitals” special issue, and so the concept of comparative hospital ratings for consumers was born. Such “best of” lists quickly became popular, despite the lack of consensus on the choice of quality indicators. In France, so many of the major national dailies and weeklies provide “best of” lists that new ones come out throughout the year and create a certain level of confusion since the institutions listed are never quite the same.
In the US, the HealthGrades Annual Hospital Quality and Clinical Excellence study examines patient outcomes at all 5,000 nonfederal hospitals in the United States, based on 40 million hospitalization records obtained from the Centers for Medicare and Medicaid Services. In the most recent HealthGrades study released on Jan 26 2010, “hospitals rated in the top 5% in the nation by HealthGrades have a 29% lower risk-adjusted mortality rate and are improving their clinical quality at a faster pace than other hospitals.”
With the arrival of Web 2.0 technologies, the first generation of hospital comparison tools took the form of rating sites; consumers would express their opinions essentially through response to multiple choice questions regarding their degree of satisfaction. At the same time other tools made it possible to pursue the narrative approach via the posting of the “patient story.”
According to Wikipedia, Narrative Medicine is actually “a practice of medicine, with narrative competence and marked with an understanding of the highly complex narrative situations among doctors, patients, colleagues, and the public.” Narrative Medicine aims not only the validate the experience of the patient, but also to encourage creativity and self-reflection in the physician. Patient narrative of course, does not necessarily imply the contribution of anyone other than the patient!
Dr Paul Hodgkin, the founder of Patient Opinion is an NHS physician who still practices part-time. He wanted to give patients a place to express their personal stories and to enable the story to reach the managers of the establishment concerned by the story. According to Dr Hodgkin,
“We now understand that the experience of being a patient, far from being peripheral to health care, is actually central to understanding the effectiveness and efficiency of services, and how they can be improved. Because the author is unconstrained by pre-set questions, they may tell their story in ways that suit them, and address whatever they see as important. Sometimes a single story will motivate staff and managers to take immediate action to put something right. And it is often the case that the patient themselves, through their experience, sees clearly how a problem could be avoided or put right. We can now make a contribution – small or large – towards co-creating, with professionals and other patients, better care, better services, and perhaps even better professionals and better policy. And as we do this, we will see the health care system itself slowly shift to becoming more transparent, more responsive.”
As the narrative approach develops in popularity, does this mean that the end is in sight for rating sites? Not really. There are several well-known rating sites in the US and many sites including a rating feature. In France, while firmly in the “rating category” although still including commentary, Guide Santé is the only such site to have experienced significant development to date. Drs Del Bano and Bach of Marseilles, the founders, are former directors of a clinic and public health specialists. Their past experience has helped them from falling into the many pitfalls of rating methodology and policy.
Drs Del Bano and Bach’s goal was to launch a successful hospital comparison web site, based on a mix of user-generated content and government data. They cite three problems that explain the attraction of le Guide Santé.
“The French national health system evaluation data on hospitals is not accessible to consumers. It does not allow the comparison of establishments on a same criterion. Up until the launch of Le Guide Santé, there was no French survey site where patients could anonymously report on hospital quality. We offer both the right to rate the establishment and to comment on it.”
Le Guide Santé is launching its V2 in the near future and has become the exclusive supplier of benchmarking information for one of France’s key digital and paper properties, “Le Figaro”.
Oh yes, and when asked the question, both sites Patient Opinion and Guide Santé report having published nearly all stories and comments that have been submitted.
We hope you’ll join us for the conversation at Health 2.0 Europe.
Denise Silber of, Basil Strategies is Health 2.0’s European partner. Basil Strategies is based in Paris, where the Health 2.0 Europe Conference will be held on April 6–7.
While we’re busy debating the pros and cons of clinical genome sequencing and tossing around buzzwords like “personalized” and “translational” medicine, I’ve recently caught some health care providers ignoring the archaic skills of communication and common sense. So while we await genome analysis apps on our smartphones and DNA sequence annotators in our doctors’ offices, here are 3 suggestions on how to provide personalized medicine right now:
