We’d have a different set of expectations from reforms to health care systems if we viewed events in our own health story as parts of our integrated life stories. To this end, interventions ought to be safe, and improve the quality of life. Lens replacement for cataract is a good example, from my own experience.
However, some parts of the world are well behind in applications of technology to improve health. There’s another campaign to rid Africa of polio by vaccination. For goodness sake, I remember lining up for the first round of Salk injections, all of fifty-five years ago. We had only triple antigen up to then, but my grandchildren receive immunisations against a dozen, or more, infections. Western life stories are no longer marked out by catastrophic infectious diseases. We take the vaccinations and antimicrobials for granted, so much that they recede into background. Vaccinations are just as likely to be viewed as possible causes of allergies or autism, than as the guarantees against deaths in childhood.
Many of the innovations that have led to greatly improved quality and length of life are regarded as matter-of-fact, and the interventions as trivial. So, if the (successful) preventive interventions are trivial and likely to be forgotten or overlooked, then health events are more likely to be given low priority in the public mind. If the public is largely disengaged from the health story, those arguing for more government investment in prevention are more likely to be in direct conflict with those dedicated to purchase of more technology, like imaging, endoscopy and key-hole surgery. Only an informed and involved public can intervene between self-interested parties who are lobbying for bigger shares of the tax revenue.
Going back to the first point, assurance of quality and safety, it’s obvious no major advance will be made there until the questions around identifiers are settled and the enabling legislation is enacted. Yet, the tricky aspects of identifiers have to be tested by broad debate and practical experience. At this stage, it’s difficult to see how the public can be drawn into the necessary discussions. It’s a fact that most of us have little interest in making any of our private data on health events available for the public interest. I say this with complete confidence, on the evidence that so few of us bother to maintain a personal compilation of our own health events. That is, if we cannot be motivated to extract data from practitioners for our own records, there is no political case for diverting funds from the Budget into EHR.
On the other hand, internet technology is leaping ahead. It’s likely that any large IT corporation with an interest in e-health will be involved in “cloud” storage. How next year’s technology can, or will, be applied to e-health is anyone’s guess. But it’s fairly certain that the latest generation of health practitioners will bring expectations of health IT, based on their “user experiences” with mobile appliances.
I go back to the concept of the “life story”. The public’s view of health data will be influenced by other events and aspirations. Since our health is taken care of very well by others, without us having to think too much about it, more interesting and personal stuff will crowd out projections of need for more e-health. Health practitioners need to take a step back, and understand that most people (voters) take their health care for granted. “Clinicians”, like trauma surgeons and intensivists, for all their 24-7 devotion to patching up broken bodies, may not be the best people to be leading the push for e-health, and, especially, the EHR.
Looking right outside the Health IT environment, for guidance, David Gelernter should be on the list of essential references. Gelernter has credibility for interpreting and predicting how we will adapt new electronic technologies. His own life experience was seriously challenged by a brush with the Unabomber. He writes “Internet culture is a culture of nowness. The Internet tells you what your friends are doing and the world news now, the state of the shops and markets and weather now, public opinion, trends and fashions now. The Internet connects each of us to countless sites right now — to many different places at one moment in time.”
There is enough data from our purchases on each of us, out there in cyberspace, to construct a useful preventive health regimen. Other people have access to it, but not us. Other people are writing our life stories for us. We, in the health professions, need to consider how we can engage with citizens on their terms, taking their interests to heart. Until we can do that, rational restructure of the health system, including the Electronic Health Record, is a poorly-formed dream.
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