2. Identifying What is Bothering the Person Most

Identifying What is Bothering the Person Most – Patient and Clinician sharing ownership

The second healthcare revolution dramatically improved the diagnosis of disease through increased sophisticated laboratory tests and better imaging, with the imaging of course being less unpleasant, MRI being a better experience than arteriography for most people.  The advent of genomic tests allowed the development of what was called Precision Medicine although the title is not always justified, it is important to distinguish Precision Medicine from Personalised Medicine.

We define precision medicine as treatments targeted to the needs of individual patients on the basis of genetic, biomarker, phenotypic, or psychosocial characteristics that distinguish a given patient from other patients with similar clinical presentations. Inherent in this definition is the goal of improving clinical outcomes for individual patients and minimizing unnecessary side effects for those less likely to have a response to a particular treatment.

Source: Jameson JL, Longo DL (2015) Precision Medicine – Personalized, Problematic and Promising.  N Engl J Med 372; 23: 2229.

… “personalized medicine” suggests an approach to care that is based on individuals rather than groups. The term has been used to describe the consideration of characteristics such as age, coexisting conditions, preferences, and beliefs in crafting an individual management strategy,

Source: Garber AM, Tunis SR (2009) Does Comparative-Effectiveness Research threaten Personalized Medicine? NEJM 360; 19: 1925-1926

Wonderful though these advances have been, multiple testing has brought about both the problem and the resulting challenges of – ‘over diagnosis’. Problems can be identified which may never have been detected before the second healthcare revolution which are abnormal in terms of anatomy and physiology but which have led them to the terms of new conditions such as pre-diabetes.  Over diagnosis is now a major challenge for all health services because it leads to over treatment which can often cause harm as well as wasting resources.  In the early days of antenatal screening and pregnancy for example, the more sensitive ultrasound machines were detecting many phenomena such as ‘echogenic bowel’.  This led hundreds of women with a normal foetus to amniocentesis procedure with a directly associated 1.5% miscarriage rate, but the echogenic bowel was simply a normal manifestation identified, and then classified as a disorder, by the more sensitive testing machine. 

In the third healthcare revolution therefore we need to think not only about diagnosis from a medical perspective but also the perspective of the person formally called the patient.

For example Mrs P was referred to an orthopaedic surgeon with a specialist interest in knee replacement but his question to her having looked at her x-rays was to ask how he could help her to which she replied “I need a knee replacement.”  Fortunately he replied with a question, “what is actually bothering you most?” to which she replied “oh gardening, I love gardening and I am having difficulty bending my knees” to which he replied,well I hope you understand that if I replace your knee even if the operation goes very successfully, you might not be able to kneel at all because some people with knee replacements find kneeling too painful.”  She stood up, said thank you and left the room, probably to go and buy long handled gardening tools or install a raised flower bed. 

She was spared having an operation which would not have solved the problem bothering her most and the hospital, and the payer, was spared inappropriate use of resources.

Implications for the Health Service – Ascertain Not Only the Diagnosis but Also What is Bothering the Person Most 

What is needed is for the health service not only to ensure accurate diagnosis but also to ensure the clinicians are clear about what is bothering the person most and that requires that person to think about and express clearly what is bothering them most, and the best way to do that is before the first face to face consultation through a digital exchange.

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