Intended for healthcare professionals

Opinion Primary Colour

Helen Salisbury: GPs and the fallout from patient research

BMJ 2023; 383 doi: https://doi.org/10.1136/bmj.p2740 (Published 21 November 2023) Cite this as: BMJ 2023;383:p2740
  1. Helen Salisbury, GP
  1. Oxford
  1. helen.salisbury{at}phc.ox.ac.uk
    Follow Helen on Twitter @HelenRSalisbury

GPs spend a lot of time talking to patients about test results, and this can be particularly difficult if those tests were performed outside the NHS. Some people choose to undergo tests offered by commercial companies—often as part of a “wellness check”—or they may accept invitations to participate in research projects. In either case, if abnormalities are found they turn to their GP.

The recent surge of concern about test results in my locality is due to the arrival of Our Future Health (OFH), a research collaboration involving public, private, and charitable sectors, with around two thirds (£160m) of its funding coming from industry.12 The programme hopes to recruit five million volunteers who will give unlimited access to their health records and DNA analysis data, which collaborating bodies can then use for health research.

Often the motivation to get involved in research is altruistic, particularly if the research is badged with an NHS logo, as people want to give something back in return for the treatment they, or people close to them, have received. Many people also believe that participating will help them gain useful insights into their current health—indeed, when the OFH website says that “you will be offered information about your own health, including your blood pressure and cholesterol levels,”3 this is made an explicit part of the invitation to join.

This is where we’ve run into trouble. The local OFH clinics have been using finger prick blood tests for cholesterol and producing results that have been found by some GPs to be at odds with the local laboratory tests. I don’t know what equipment is being used, but a recent study of available “point of care” testing kits has concluded that only a minority are accurate when compared with a laboratory standard.4 In practice, erroneously high results have meant patients coming to their GP requesting treatment. We then need to repeat the test and, usually, reassure the patient. I’ve seen no hard numbers, but it’s happening often enough to have appeared in a local GP newsletter, leading to concerns about unnecessary anxiety for patients, as well as grumbles about extra workloads for GPs. The Berks, Bucks and Oxon Local Medical Committee has put these points to OFH, which has advised that these concerns are being looked into and has offered some reassurance about quality checks on its point-of-care testing.

Patients over 40 will have already been invited by their GP surgery for an NHS health check, which includes measurement of cholesterol and blood pressure as well as advice about diet, alcohol, and smoking. The OFH appointment may have much in common with this, except that the results won’t be incorporated into the patient’s medical record or acted on. There’s a risk of either wasteful duplication, if patients go to both appointments, or a lost opportunity to improve cardiovascular health if the patient attends only the OFH appointment. There’s also scope for confusion, and we’ve already heard of patients declining the NHS health check because they say that they’ve already had one with OFH.

The possibility that the project would create extra work is clearly recognised by OFH, as its ethics and governance framework states: “Our Future Health must be careful to ensure that healthcare professionals are properly prepared, well informed and not overburdened as a result of the programme.” This proposed engagement with GPs hasn’t materialised, and we seem to have reached the situation that OFH’s own ethics framework goes on to predict: “Unhappy doctors and unhappy participants could soon damage the credibility of Our Future Health and its ability to achieve its mission.”

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