Are E-Patients Overwhelmed?


Applied Clinical Trials

As the revolution in information and communication technologies gathers pace, concerns about changes to clinical trial management proliferate - as do anxieties over how far all the trappings of e-health are a blessing or a curse for patients. But for Jan Geissler, himself a chronic myeloid leukemia patient, and one of Europe's leading advocates for rare disease sufferers, there are no such anxieties. The e-patient is not overwhelmed, but empowered, he told the annual meeting of the European Forum for Good Clinical Practice (EFGCP) at the end of January.

Offering the patient's perspective on new technologies, he pointed out that patients were already taking advantage of the opportunities offered by the brave new world that electronics had ushered in. Patients are, in fact, often far ahead of regulators and politicians, who have not realized quite how far the ground has shifted under the healthcare system. Many of the old assumptions have rapidly become invalid.

The idea that information about health, diseases and treatments should be a restricted area, the preserve of professionals only, is completely out of date, he argued. "Google is here to stay", he said. "Regulators and politicians still believe in the myth of the medical walled garden, bit it has been a myth for years", he insisted. There is no longer any point in trying to enforce controls on information by law, codes or warnings. The digital reality today is that all patients are accessing online information. He cited estimates that 53 million Germans above the age of 14 are online, and in 15 EU countries surveyed, almost all patients have access to online information, with even the elderly obtaining input through their friends and relatives. The trend is strengthened by social media, which are themselves creating their own revolution in patient advocacy, he went on. They promote the growth of information and support through grass-root platforms on treatment, trials and patient reported outcomes. They assist in campaigning, giving patients themselves a channel to voice their needs. And they even enhance research, by allowing collaboration in trial recruitment and establishing research priorities. Courtesy of the internet, access to information is now virtually universal, and virtually instantaneous.  Given that reality, "bad information can be displaced only by good information", he said.

In his experience, today's e-patients communicate, learn, manage their health - and discuss among themselves about clinical trials. The increased literacy is a good thing, not a bad thing. And as the medical monopoly on information is broken, the shared decision-making that is emerging as a consequence will improve outcomes and efficiency, Geissler believes. "Roles are not only shifting, they are flipping around", he said. The traditional relationship in which the doctor tells the patient is evolving into something much more like a partnership. And, he concluded, the empowered patient represents the most underutilised resource of the healthcare system.

The EFGCP conference, which focused on the ethical dimensions of emerging technologies in clinical trials and research, reflected on plenty of other aspects of what technology is doing to trials. But amid all the new hardware and software, what will count more and more is the voice - individually and e-collectively - of the patients themselves. And that is something just as daunting for the clinical trials community as any technological challenges.

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