What happens when patients start working together?

“Can a patient invite another patient to look at their record?”

This question really made me pause. The answer is definitely “yes”, because each patient using Patients Know Best is able to invite anyone they want to look at their records. But when we initially designed the platform the assumption was that patients would use it with their clinicians, relatives, social workers and others who help with the patient’s health. Until the social worker brought up this question in clinic today, I had not thought about patients working together using PKB.

Of course, patients have been working together online for many years. Important efforts included the Association of Online Cancer Resources (ACOR) and more recently PatientsLikeMe arose. As Dr Wicks explained in the PKB podcast, PatientsLikeMe is a community of patients who share their entire records online because they believe that they can learn from comparing their records with those of other patients. Right now, you can see the records and photographs of hundreds of people with HIV.

Because beyond a certain degree of illness, patients worry more about the risks of not getting the right treatment than they do about the risks of losing privacy.

However, many clinicians worry about such comparisons by patients, between patients. And I paused when with the clinical team because I was not sure how best to assuage their worries.

But they should not be worried. Fundamentally, it is a good thing when patients spot variations in treatment. As my public health mentor tried hard to teach me in medical school, the only benefit in variation is if we are testing to see which variant produces better outcomes for patients. Otherwise, arbitrary variation wastes resources and delivers poor patient care.

Given that identifying variation is hard – privacy concerns make large-scale research expensive for health care systems, and time pressures make routine research difficult for clinicians – PKB becomes a useful tool for change. As patients spend time understanding each others’ care they save the time of clinicians by bringing up useful interventions from the efforts of other clinicians.

The other worry that clinicians have is that patients would demand more treatment as they learn more about what is available. But this assumption is not supported by the evidence. Dr Steve Laitner, co-chair of the long-term conditions team at NHS East of England, is fond of citing the research of Connor et al, Decision aids for people facing health treatment or screening decisions.

It is worth reading all his slides from his lecture on home health care, but briefly, his point is that when patients find out more about treatments they often decline rather than demand it.

Which brings us back to the reason we named our company: although not every patient knows best, groups of patients, working together, demonstrate a remarkable capacity to know best. At PKB, we are proud to enhance this capacity through our work.

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