Unleashing the potential of global Britain for life sciences: Part Three
By World Pharmaceutical and Biotech Journal-
“Before we are patients, we are people” – Dr Helen Bulbeck, Director of Services and Policy at brainstrust, the brain cancer people
Continuing a discussion on the role of global Britain in life sciences hosted by IQVIA and Public Policy Projects, chair of the webinar Angela McFarlane welcomed contributions from Dr Helen Bulbeck and Lynelle Hoch before chairing a discussion with attendees.
Dr Helen Bulbeck, Director of Services and Policy at brainstrust, the brain cancer people, furthered the patient-focus of the discussion by exampling some of the lived experiences of patients with rare or genetic diseases who could benefit from genomic research. Dr Bulbeck’s focus was “patient validity” and she argued that by making patients part of the genomic process – that is, teaching them how their data will be used and how it may further accelerate the treatment of others in the future – patients could become “co-pilots in their own care”. This may provide the most vulnerable and isolated a feeling of purpose, even if the patients themselves do not survive to see the results of their impact.
Genomics becomes “an end in and of itself” by making patients feel as though they are part of the ‘treatment story’ while providing experts with valuable data concerning diseases, where this is lacking. A lack of biomarkers and knowledge of system biology in relation to rarer cancers, for instance, means treatment is limited. However, if patients with these diseases feel as though they are having an impact on the development of a cure, they may “build [a greater] resilience to living with uncertainty”.
If the patient is to feel a part of the process, or that their privacy remains a priority, they must understand how their data is used. Closing the “knowledge gap” between patient and clinician by changing the language used within the medical discourse when treating and diagnosing a patient is a vital first step. To this end, Dr Bulbeck emphasised that we should “stop talking about the cure” and use instead the language of “extending life”. This aforementioned “knowledge gap” is partially responsible for patients’ uncertainties. Dr Bulbeck affirmed: patients are “only empowered by information when [they] understand it”. Too often conversations between clinician and patient are focused exclusively on the next treatment rather than what matters to the patient. In some cases, this can even lead to misdiagnoses. Dr Bulbeck suggested implementing focus groups to assess patient needs but also to gauge how they feel about the collection of their data and its utilisation. Ultimately, “the patient is the expert on them[self] and the clinician is the expert on options”. Genomics is, therefore, an inherently empathetic practice, not only a data-driven one.
Dr Bulbeck concluded by addressing the “good bedrock” for genomics and precision medicine established by Covid-19. The pandemic proved the need for “robust” support frameworks for those patients whose data is being collected but who continue to suffer. Whilst some patients may benefit from the idea of what their data could do in the future, most will continue to rely upon the emotional care delivered by healthcare professionals.
How the lessons of today will transform tomorrow
UK & Ireland General Manager of Bristol Myers Squibb (BMS), Lynelle Hoch, synthesised Professor Allen and Dame Sue’s concerns over ethnic disparities in the data and Dr Hackett and Dr Bulbeck’s emphasis on collaboration and learning the lessons that Covid-19 has taught us, saying “collaboration is key”. Ms Hoch conceded that, whilst there were “moments of glory” during the pandemic, “there were moments we weren’t proud of”. Ms Hoch highlighted how important for genomic research having the most ethnically diverse population in the world on one island is: “The Globe exists in Britain”. She argued it would be an act of tremendous oversight to allow the “health disparity issue” to weaken clinical and real-world research, believing genomics has indeed the potential to “close these disparities” and create a universal system that benefits the whole of the UK’s population.
The patient-focus of previous speakers was again reiterated when Ms Hoch said of each and every employee at BMS that they “work for someone’s loved one”. Genomics has the potential to turn data into “a horizon scan”, enabling clinicians to rapidly speed up the diagnosis and treatment stages of patient care. If these processes can be sped up as she imagines, the diagnosis paradigm can shift to having a more preventative focus. Covid-19 proved the necessity of such a shift. Ms Hoch noted how, under duress, the UK healthcare system placed speed of care over bureaucratic barriers and the end result was one of the most effective vaccination programmes worldwide.
Asked which other nations the UK was competing against, Ms Hoch suggested the United States, China, and Europe. If the UK is to remain competitive, she argued that we need to critically evaluate how effectively we are performing in certain key areas and identify the areas requiring development. The UK has excellent data pools and infrastructure but we must utilise what we already have correctly. Echoing Dr Hackett’s patient-before-competition sentiment, Ms Hoch stated: “we believe to answer the most difficult scientific questions we have to do so in partnership” with other communities, not against them.
Having taken many questions throughout the dialogues, the webinar concluded in a brief question and answer segment which opened the floor to participant questions.
The first was directed at Professor Hill, asking how far genomics can be truly integrated with routine care given the extreme pressures all NHS staff are working under. Admitting that there were “still pockets of clinicians who need to be moved” towards accepting the changes, research needs to be “part of every episode of care” within the NHS and, therefore, normalised into a standard “part of routine care”. So much has already been achieved by the NHS that Professor Hill remains steadfast that genomics could can be woven “into the fabric of the NHS” and its benefits would revolutionise British healthcare.
Professor Allen was then asked how readily clinicians could access genomic data when treating patients. Whilst data kept by UK Biobank could not be accessible at this level, Professor Allen suggested that it would be possible through Genomics England.
Angela McFarlane concluded the discussion by praising the work already done by the speakers and echoing their reticence about complacency. Whilst the UK leads the world in genomic data, she reminded us that the UK should not, and must not, “rest on its Genomics laurels”. The global pandemic proves, the pivotal role of genomics in fighting pandemics, building resilience to new variants, but also the absolute necessity of international cooperation.
A final poll was conducted which was a repeat of the first. Both can be seen below:
A full recording of the session can be accessed here.
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