Meta-patient: balancing the value of people and their data

meta – definition

A prefix meaning one level of description higher. If X is some concept then meta-X is data about X.

 

– Is your doctor interested in you, or in something about you? –

 

As a 3rd year medical student in Bristol I overheard a conversation between the senior registrar and his consultant. The senior registrar had just been appointed to a consultant post in the same hospital, and he was overjoyed. His soon-to-be colleague said to him

            ‘It’s great, but you need to find something else to do.’

I kept listening.

            ‘Seeing patients just isn’t enough to keep you going for twenty-five years.’

What on earth was he on about?

 

His point was that seeing patients day in – day out does not provide sufficient intellectual reward. Although treating thousands of individuals over a career would seem more than enough (and a privilege at that), many doctors feel the need to step back and understand where they, and their patients, belong in the scheme of things. In addition, they feel the need to ‘make a difference’ on a larger scale. To achieve this it is necessary not only to manage patients as they arrive in the surgery or the ward, but to gather data, recognise patterns and communicate those findings to the wider world.

To a greater or lesser extent therefore, doctors come to see each patient not only as a person with specific needs and expectations, but as a part of a cohort, bringing with them information that may not directly inform their care, but which may be useful to the population in the longer term. It is these measurements (blood results, physiological variables), when added to the whole, that go to make up the ‘meta-patient’*. So what’s the problem? Does the fact that a ‘body of data’ sits alongside the ailing individual detract from the purity of the doctor-patient relationship?

At first glance there should be no connection between the ability to provide compassionate care and the need for ongoing intellectual stimulation. However, I believe that there is a balance to be struck between our primary role, as carers, and our academic or intellectual pursuits. Different doctors respond to different forms of mental stimulation, and I think it is important that each one reflects on what it is that really makes them tick. There is a risk, in my view, that if the data a patient provides becomes more important to the doctor than their problem and its treatment, they may begin to value the meta-patient more than the real patient.

 On a day-to-day basis, for the majority of doctors, it is undoubtedly the process of meeting patients, making diagnoses and observing how they and the disease respond to treatment which provides most satisfaction. Empathy, trust and gratitude enrich this experience. But we must be honest about the benefits of data collection in order to comprehend the full spectrum of medical motivation.

 Data collection allows us to develop databases, be they local, national or global. Sitting back in the office, looking at the numbers in a spreadsheet, the doctor reflects on his or her cumulative experience. The accumulation of small interactions begins to take shape, like a pointillist painting. By developing hypotheses and processing the data we are able to publish abstracts or papers. If we are lucky and so inclined, we may take the results to national or international meetings. Egos are augmented, and the most assiduous or gifted will develop great reputations. Knowledge grows, breakthroughs in our understanding occur, healthcare improves, humanity benefits. I am not cynical about this…just fascinated by the fact these developments remain largely invisible to the patients who contributed to them.  

&nbs
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Through anonymisation, data becomes separated from the person. The meta-patient takes on a life of its own, melds with the cloud of information that has been collected elsewhere, and is subjected to statistical analysis. Now, from the point of view of the study in question, it does not matter if the patient improves, deteriorates or dies. It is the data that matters. For the doctor who saw the patient it is necessary to remain focussed on the individual’s wellbeing. For the good of the study it is important that whatever happens, the outcome is known and reported.

 The question then comes – when you meet a patient for the first time, one whose disease falls within your area of research expertise, do you think first about the needs of the individual, or the value of their data?

 My own experience of this is limited to a two year research project that I undertook into liver disease. I roamed the wards looking for patients who fulfilled the criteria for my study, and was excited when I found one. Each successful recruitment took me closer to my target of 100 patients. Having obtained their consent I diligently recorded the relevant data, took the special blood test and ran off to examine the white cells. From that point on, my interest in the fate of the patient was, in the truest sense of the word, ‘academic’. The crucial point to make here though, is that I was not on the medical team looking after these patients. As a research fellow I functioned separately, so there was no overlap between my usual role, that of providing medical care, and my research role. I often wonder (not being a particularly ‘academic’ physician) how doctors who are perpetually involved in clinical trials manage this dichotomy.

 Observational studies, like the one I conducted, do not involve treatment decisions, so the psychological (if not ethical) dilemma is less challenging. Studies that focus on treatment are far more important and delicate. However, these are highly regulated, and in my experience the clinicians involved have no problem separating their duties as a physician from their academic interest. In fact, I believe that involvement in therapeutic trials often brings with it the benefit of close observation and even more careful management.

 Is it worth highlighting the dual roles of doctors, and the invisible simulacrum that accompanies their patients? I think so. Doctors, especially those in training, need to recognise where they derive their energy from (one-to-one interactions, patterns, both?); and patients should be aware that when they come to hospital, their meta-self may elicit as much interest as their true self.

 

* This term came to me over my cornflakes recently, and it sounded so cool I had to use it. I have not seen in used elsewhere.

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