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Blog: Balancing the art and science of treating high blood pressure: is there a better way?

A blog by Natalie Fitzpatrick, AboutMe Patient Engagement

The last month saw the first twenty patients recruited to an important new programme at UCLH called AboutMe, supported by the NIHR UCLH BRC, with the aim of embedding research into routine clinical care. High blood pressure is a common, complex condition that is influenced by multiple common genetic variants, and is an important risk factor for developing cardiovascular disease. The first demonstration project, which is being carried out in the blood pressure service by Dr Reecha Sofat, consultant Clinical Pharmacologist at UCLH and Clinical Lead of AboutMe, will recruit 100 patients to try to understand why some people have high blood pressure, and test governance, bio-banking and clinical informatics pipelines to assess the feasibility for such testing to be rolled out across the NHS for other disease areas. This programme is trying to first bring genomics into focus for common conditions (embedding genomics into healthcare is currently restricted to rare diseases and cancers), and second, learn if this can be embedded into routine workflows and practices.

Sitting in on Dr Sofat’s Tuesday afternoon clinic in the UCLH Cardiovascular Risk Clinic on the first day of recruitment of patients to observe the consent process was thought-provoking.  Patients presenting to the clinic were about as different from each other as they could be - reflecting the range of people with this common condition - people in their mid-40s up to their ninth decade, from different ethnic and socio-demographic backgrounds, experiencing varying degrees of frailty, comorbid conditions, and views and concerns around what was being asked of them. The study is conveniently rooted in routine care to minimise disruption to patients.  Eligible participants were identified prior to their clinic appointment so they could be sent information in advance. On arrival for their routine appointment, a nurse recorded the standard clinical observations (height, weight, blood pressure and took a urine sample). Patients were then seen by Dr Sofat (one of four clinicians at UCLH who will be recruiting patients to the study) for their clinical consultation. Blood pressure results taken moments earlier by the nurse and referral letters were available to the clinician at a click of the button with the new EPIC electronic health record system implemented at UCLH last year.    

Listening to the consultation, it struck me how much time was spent conferring about drug side effects and the ensuing modification of the dose, timing and nature of therapy by the doctor in an attempt to balance the benefits versus the harms of treatment. The side effects of one medication could be alleviated by stopping that drug and upping the dose of another one, which may lead to a new adverse reaction. One patient described his drug dilemma as “Hobson’s choice”. We hear a great deal about the potential for personalised medicine approaches to optimise drug treatments by predicting which patients may benefit from taking a particular drug or predicting who might be more likely to suffer side effects. One important anticipated benefit of this programme is that it will ultimately enable us to understand if we can ascertain which medications individual patients should be prescribed with least harm and most benefit. 

At the end of the clinical consultation, Dr Sofat invited her patients to consider participating in the study, ask questions and discuss any concerns. Consent was sought from patients to access their medical records, obtain a blood and urine sample (taken alongside routine samples) for analysis of a number of blood markers and genetic tests for research, and donate surplus tissue that may be taken as part of standard care that would otherwise have been discarded for research purposes. Research samples will then be processed and stored ready for measurement (metabolomics and proteomics) and RNA and DNA extracted for genotyping.  Consent was also sought to re-contact individuals about further research. This will include a ‘return of results’ pilot study where patients will be invited to agree to have their genetic and other information returned back to them in the form of a personalized report in the clinical environment. Returning results to patients, including secondary (also known as incidental) findings, has been the subject of much recent debate. Feasibility and ethical and practical considerations need to be carefully teased out, and an extensive programme of engagement with patients must be carried out to communicate and understand the impact on psychological, behavioural and clinical outcomes of returning personal results to patients. This will be the first time this has happened in the UK NHS for a common disease like raised blood pressure.       

Of the nine patients seen in clinic on the first day of recruitment, seven consented to participate in the study.  Patients raised a number of important issues about the research.  More than one patient queried consent being sought to donate a tissue sample for research worrying that we would want to take a sample even if they didn’t need this done for their usual care.  Some wanted affirmation (and were noticeably relieved) that they were not being asked to have additional blood drawn or have to do anything differently like attend the hospital more frequently as a result of the research.  Patients raised questions around data security and implications for their health insurance, and queried how and when the research findings will be made available.  Perhaps inevitably the issue of use of their data by commercial organisations arose due to the concern that their data may be exploited by private companies, with one patient saying he would prefer his data are kept within the NHS.  Another patient, while understanding that the study will not benefit him directly, queried the mechanism we will adopt for informing a patient of a worrying finding as a result of the research and referring them on for crucial treatment.  

The AboutMe team will be running a programme of engagement events for patients and the public over the next 6-9 months, looking at issues around consent and return of results amongst others.  You will be able to find out more about these public engagement events on the UCLH BRC website https://www.uclhospitals.brc.nihr.ac.uk/

Find out more about AboutMe by following us on Twitter: @UCL_AboutMe