Dr Laura Sbaffi, Senior Lecturer in Health Informatics, Information School, University of Sheffield,UK highlights that health informatics has contributed massively to the democratisation of health and patient empowerment, implying that, like never before, people have the possibility of being in control of their own health from everywhere and at any time
The concept of health informatics is almost as old as I am (well in my 50s!). However, in academic terms, it is surprisingly relatively new. This very broad field has a common goal: to provide better health and wellbeing for all via the use and management of digital technologies, medical data, and information. Health informatics has contributed massively to the democratisation of health and patient empowerment, implying that, like never before, people have the possibility of being in control of their own health from everywhere and at any time. For example, telemedicine, mobile health, and remote care all involve the use of technology and telecommunications to bridge the gap between patients and healthcare providers. Wearable devices, sensors, and mobile applications can collect real-time data on vital signs, symptoms, and treatment adherence. Healthcare providers can remotely monitor patients’ progress, provide virtual consultations, and intervene when necessary. In countries like the UK and India, where there is a high mobile phone penetration rate, these solutions are a powerful tool for improving healthcare delivery and can really enable health education and promote self-care. However, this is not enough, as the most vulnerable voices are still unheard.
The goal of ‘better health for all’ is bold and worthy but also (please excuse my bluntness here) controversial. I am currently in the strange position of being a health informatics specialist as well as the Director of Equality, Diversity and Inclusion in my department. So, while a part of me needs and is willing to be an advocate for use of technologies in health, the other part is painfully conscious of its potential to widen an already profound social divide. While technological innovations can significantly promote and support whole-person healthcare, they can also reinforce and exacerbate structural inequalities among the most vulnerable and marginalised of the population. Whilst this portion of the population can be helped in pursuing good health standards and using technologies to ease their everyday life, these same technologies entail being able to use them, afford them and connect to fast broadband, all at the same time. Factors like increased cost of living, lack of infrastructures, the characteristics of this population, combined with digital poverty, imply that, more often than not, such technology-enabled solutions will not be widely available. Further, considering that potential beneficiaries of these solutions tend to have a smaller digital footprint overall, analytics, predictions and, therefore, interventions can have significant implications for the level and nature of care said beneficiaries may receive in the future.
Nevertheless, let’s assume for argument’s sake that people can indeed afford, connect to, and use technologies for health. The widespread use of services like NHS 111 and human-like chatbots powered by natural language processing shows that digitisation in healthcare can work, particularly if used as a triage tool aimed at relieving some pressure on primary care. However, when a patient from an ethnic minority or an elderly person interacts with such services, not everything goes as smoothly as it should. In projects I’ve been working on with Dr Pam McKinney looking at health information literacy among Roma, Somali and Yemeni communities in the UK and with Dr Efpraxia Zamani on older LGBT unpaid carers in the UK and other carers in Malawi it has emerged that people with limited education levels and for whom English is not the first language are often the recipients of dismissive and patronising behaviour when trying to benefit from these highly digitised services. Voices and accents are not recognised, the language used is complex and technical, symptoms are misunderstood or dismissed, support is delayed or not provided at all. The result is a growing sense of distrust in the healthcare system among these underserved communities, and the exacerbation of health inequalities.
Thankfully, I am witnessing a shift in the major health research funding bodies in the UK (e.g., UKRI, NIHR, MRC, Wellcome Trust, Nuffield Foundation) towards supporting more ‘qualitative’ and co-created projects, seeking to work with patients and promoting interventions that develop a sense of ownership by the communities involved. I have worked with rural communities in Malawi addressing the information needs of informal carers of people with HIV and found that, even severely marginalised people have a thirst for knowledge and a desire to be involved in their own care. Following their guidance, we devised a service delivering health advisory messages via the WhatsApp audio function as this was already widely used across communities for updates and news. This made me realise that the first step to having a more inclusive and effective healthcare is to work at the grass root and really listen to the barriers and facilitators that underserved communities experience and identify, with them, solutions that are affordable and sustainable and that maximise the use of resources already available on the ground. This is, to me, what is meant by ‘global health informatics’. The principles of ethical digital development must be followed when researchers collaborate with the public. Developing interoperable, sustainable, and locally led initiatives is a critical component of partnerships that involve health information and communication technologies. After all, great advances usually begin with small steps!