14-15 - EDI

The equality, diversity and inclusion (EDI) agenda presents health and care researchers with many challenges, characterised by phrases such as ‘reaching the hard-to-reach’ and ‘meeting unmet need’.

Professor Francis Martin, Lead Manager for Research, Development & Innovation at the NIHR Patient Recruitment Centre: Blackpool, examines the possibilities for reaching into communities for recruit identification to facilitate long-term disease management in the emerging digital era.

Modern research is primarily a Western developed world phenomenon. New developments and infrastructures drive economies. A significant arm in research and development is healthcare provision.

As a consequence of new screening and diagnostic tools, better medicines, enhanced imaging modalities and improved management of disease, more people live longer.

However, in what has been traditionally a population-based system of healthcare research, such benefits often appear to have not reached all corners of our society.

A one-size-fits-all model that has emerged from studies undertaken primarily in Caucasian populations might not be equally beneficially translatable to other ethnic groups. This can be starkly observed in post-treatment oncology outcomes where prognosis amongst Caucasians is better than that amongst people of African descent.

Diabetes in groups of Indian/Pakistani descent is highly prevalent but may be underreported, especially in the earlier stages when intervention might significantly delay irreversible consequences, such as neuropathy.

The question then arises as to whether modern computational methods exploiting information-rich databases can help us address the unmet medical needs of such populations?

Patient and Public Involvement and Engagement (PPIE) is the latest banner to be held up to address the need for equality, diversity and inclusivity (EDI). At its core is the notion that one involves the public in the decisions regarding the research that is undertaken to benefit society.

Albeit noble in concept, this is by no means a new concept and one might argue that only the terminology has changed while the core problem has remained persistently the same through the last three or four decades.

The opaque conundrum is how does one engage seemingly marginalised (by reality or perception) communities in research that is for their benefit? As an example, sickle cell anaemia is the fastest growing genetic condition in the UK, and demand for blood from black donors to help those in their own community remains a pressing concern.
This is not a new problem, however – there were campaigns in the 1990s to entice members of the Black community to donate more blood.

Men of an Afro-Caribbean background have a higher presentation of advanced prostate cancer primarily because, unlike their white counterparts, they are less likely to engage with healthcare services early. This remains an issue despite more than a decade of campaigns to raise awareness of prostate cancer.

Even in Caucasian populations wherein one increasingly observes a stark disparity in socio-economic circumstances, the presence of cardiovascular disease is surging in the middle-aged and mental health disorders plague the youth in socially-deprived areas, such as Blackpool.

Understanding such population demographics to identify cohorts that could benefit from emerging treatments will be the gauntlet thrown down to those setting up clinical trials. It is not that there is a lack of desire to recruit participants from segments of society hitherto underserved, the difficulty is in how one attracts such individuals to become recruits to trials.

When an individual or even a community does not feel part of, or even feels abandoned by, the wider mainstream society, there may seem no reason to put oneself or one’s family forward for intervention or treatment. Two approaches are necessary to overcome this distrust:

1) A carefully assembled evidence profile from a deep analysis of demographic data housed in emerging databases, such as those provided by the company TriNetX (who provide an intuitive query builder platform that facilitates the user to query millions of de-identified patient records) or the Health Informatics Collaborative (HIC; a UK NIHR-funded partnership of 28 NHS Trusts and health boards, to facilitate the equitable reuse of NHS data for translational research).

2) Armed with this evidence, an ability to enter the world of these marginalised segments and communicate (maybe in a different language or means of empathetic vocalisation) the importance of these findings.

The former will undoubtedly occur. There will be innumerable projects for PhD students and postdoctoral fellows with many, many high-profile papers in leading journals published. There will be much talk of addressing unmet medical needs.
The difficulty will be in the communication to the enduser, the person on the street in the community.

What approach can one adopt to enter a housing estate to recruit alcoholics or drug users to control their liver damage or mental health issues? Even to educated groups that may have a memory of racial discrimination or intolerance, where can there be buy-in?

The evidence garnered from digital databases needs to be disseminated in the familiarity of a community-based system. There needs to be local champions, not individuals with a career objective; the latter will be identified and ignored all too quickly.

These community champions should have the ability to enter these marginalised worlds and to be the link to convey the message. Interestingly, with TriNetX data one can after identification of suitable cohorts delve into underlying treatment/outcome characteristics.

Even better, there is the potential to go back to the original contributor of the patient records (e.g., the NHS Trust) and, through a governance-regulated process, de-anonymise the patient data. This enables one to offer opportunities to participate in clinical trials to those patients.

This is a powerful new evidence-based method of identifying segments of society with a particular medical need and allowing the potential to offer new treatments. A lead example of this is the five Patient Recruitment Centres (PRCs; based at Blackpool, Bradford, Exeter, Leicester and Newcastle), which are NIHR funded clinical trials facilities.

These strategically located PRCs have in their surrounding niche populations a range of health disparities that require urgent addressing. Through the transition and progress of their comorbidities, members of the public will likely interact with the health services at some point, be it through primary care or a hospital visit.

The ability to capture their data and then harness complex databases to identify the potential recruitment cohorts that will best respond to novel treatments is a rapidly developing approach for the PRCs to reach out to such communities. This will facilitate the delivery of ever more complex treatments to hard-to-reach patients with the greatest need.

Humans are complex entities not only in their outbred genetic profile but in their lifestyle characteristics. As such, more and more are living with chronic conditions that can include the usual suspects such as cancer and cardiovascular disease but also, increasingly, mental health disorders.

Digital systems are a powerful means to extract features to allow the targeting of certain cohorts for treatment interventions. There is a strong emphasis on bringing academic research and community together and an example of this is the recent NIHR Health Determinants Research Collaborations (HDRC), which sets out to focus on improving wider determinants, or drivers, of health.

These are primarily led by local government but are also collaborations with academic partners. Reaching into marginalised segments of society to offer new treatments is an investment in people and addresses a socio-economic disparity that has been growing in recent years.

The use of emerging clinical databases to identify such groups provides the evidence to justify the approach. Finding the means of approaching such individuals or groups to participate remains a challenge.

Brave. New. World.

The EDI enigma

Data is just the beginning

Engaging underserved communities