During my histopathology training, my mentor taught me that one had not finished an autopsy until the bereaved fully understood why the patient had died. When I started applying this as a consultant in the 1990s, I realized how much comfort it gave – and how little the living knew about disease, autopsies, and death. Then, while chairing the local Research Ethics Committee, I discovered just how difficult medical researchers found the process of explaining concepts they understood to the general public. Working in a small town, I was often asked to speak about aspects of medicine and research to schools and local community groups.
Then came the Alder Hey organs scandal, in which patient tissues were retained without family consent. I was as guilty as most in the “what they don’t know won’t hurt them” style of paternalism. I spoke to a number of people whose relatives had samples taken and retained at autopsy. All of them seemed to have the same attitude as some of the Alder Hey parents – if they had been asked, they would have donated some organs for research (1). The resulting Human Tissue Act of 2004 required each hospital to appoint an individual who was personally responsible for delivery of a lawful service, a role I acquired at the Norfolk and Norwich University Hospital.
In 2011, the Royal College of Pathologists (RCPath) developed an outreach workshop to help students understand issues surrounding tissue retention. The two-hour “Your Body, Your Consent” workshop features a short lecture followed by group discussions (2). Pathologists who volunteer to facilitate the discussions are encouraged to allow each student to develop their own ideas and understand the validity of those expressed by others. The workshop was extremely popular and I became its lead presenter, delivering it alongside a number of other RCPath outreach sessions across universities, schools, science festivals, and other public events.
I believe that understanding pathology is central to the effective practice of medicine; my educational paradigm is that we should concentrate on the delivery of understanding, not teach facts. And it’s this key principle that I applied as lead teacher of pathology at the University of East Anglia and something I still apply to all medical outreach teaching.
But what is the point of all this effort?
The cost of healthcare is significant. Northern European democracies spend about 10 percent of GDP on health; in the US, that figure is over 17 percent (3). Yet healthcare recipients have little opportunity to properly understand where the money goes. In the recent UK election, the National Health Service was a major talking point; parties offered massive sums of money without precisely setting out the future benefits. In the UK, the impossibility of delivering on the pledges made by successive governments has contributed to the devolution of healthcare decisions to local communities, and to a degree of so-called “postcode prescribing.” The public understands the effects – but not the cause – of the resulting differences in care provision.
Although anyone with a sick relative can easily find promises of a cure with a short online search, few of these are free. What’s more, many will not have a credible research base, some will quote incorrect statistics, and those that are factually correct are often misleading. How much emotional anguish is expended on these false hopes? And how much money does it cost? The average person with a limited understanding of the biology of disease has little chance of making an informed decision on health issues.
A basic democracy fundamentally relies upon the presence of a well-informed electorate (4). Healthcare is a huge issue in democracy and, as such, those of us who have some understanding can make a truly positive impact by sharing our knowledge in an accessible way with those who don’t. Working with teenagers at RCPath outreach sessions has highlighted to me how important it is to start these informed conversations about health issues as early as possible. Not only is it inspiring for young minds, but it is also rewarding and eye-opening for the pathologists involved. I urge you all to get involved in these types of activities, wherever you can!
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References
- The Royal College of Pathologists, “HTA Discussion Cards”. Available at: https://bit.ly/3abXHSO.
- The Royal College of Pathologists, “Your Body Your Consent”. Available at: https://bit.ly/2I3OaBe.
- Office for National Statistics, “How does UK healthcare spending compare with other countries?” (2019). Available at: https://bit.ly/2v8XWiO.
- The Century Foundation, “A Well-Informed Electorate Is a Prerequisite for Democracy” (2013). Available at: https://bit.ly/3cdhXp5.
