The Personal Touch in Patient Information

April 19, 2013
Peter O'Donnell
Peter O'Donnell

Peter O'Donnell is a freelance journalist who specializes in European health affairs and is based in Brussels, Belgium.

Applied Clinical Trials

Another of those ceremonial high masses in pharmaceutical circles took place – aptly enough, in Rome – on April 19.   This one was the "first EUPATI conference," even more grandly sub-titled "EUPATI -  a vision for 2020."  I must immediately declare an interest: I am a member (unpaid – a rare excursion in pro-bono work for a journalist living by what is left of his wits) of the EUPATI advisory board, and I was also a speaker (does that make me a co-celebant?) at its conference.  EUPATI is one of the projects under the Innovative Medicines Initiative , and its stated purpose is to provide neutral education, training and information to patients on medicines research and development.

This is not the place to discuss EUPATI and its ambitions, or to provide a report of the conference. But I was struck by the candor with which one of the speakers addressed the subject. Ingrid Klingmann, who is already well known in clinical trials circles, and plays a prominent role in EUPATI too, abandoned her customary practice of a professional power-point presentation, and set out her motivation for involvement in the project in purely personal terms.

Amid all the strategy and theorizing that is the core agenda of any such meeting, her approach was particularly compelling – sufficient to persuade me to offer a glimpse of it.

Ingrid's early vocation as a country doctor did not, she recounted, meet all her hopes, because she was forced to recognize that for so many of the diseases her rural patients suffered, no effective therapies existed. So she went into clinical research in a bid to help fill the gaps. Until a diagnosis of breast cancer stopped her in her tracks in her 40s – and left her, on her own admission, so disconcerted by the prospect of premature demise she lost all ability to function rationally. Only once she realized she was unlikely to die from the disease did her professional capacities kick in again, and she was able to constructively discuss treatment options with her specialist.

It was during post-operative therapy that she found her fellow in-patients, baffled by the information they had received from their treating doctors, coming to her for explanations – and only then did she fully realize quite how hard it was for patients to absorb information from their doctors ("It was the same when I was a country doctor", she added. "Whatever I told them by way of explanation always went in one ear and out the other"). At the same time, she also realized how much easier it is for patients to absorb information from other patients – since although it was known in the ward that she was a doctor, patients came to her as a fellow-patient. "This showed me how important it was for patients to know what's going on," she said.

And on this basis, she had, she said, engaged over recent years in a series of projects that have now fed into the five-year EUPATI project. "It is my hope," she said,  "that by 2020 there will be millions of European patients getting better information about their therapy from knowledgable patient representatives who have benefited from the EUPATI project."

Her remarks won enthusiastic applause from the many patients and patient organisations in the audience – and may well strike a chord elsewhere too.

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