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Viewpoint: digital paediatrics—so close yet so far away
  1. Kai O Hensel1,2,3,
  2. John Powell4
  1. 1 Department of Paediatrics, University of Cambridge, Cambridge Biomedical Campus, Cambridge, UK
  2. 2 Helios University Medical Centre Wuppertal — Children's Hospital, Witten/Herdecke University, Wuppertal, Germany
  3. 3 Department of Paediatric Cardiology, Intensive Care and Neonatology, University Medical Centre Göttingen - Children's Hospital, Göttingen, Germany
  4. 4 Nuffield Department of Primary Care Health Sciences, Medical Sciences Division, University of Oxford, Oxford, UK
  1. Correspondence to Dr Kai O Hensel, Department of Paediatrics, Witten/Herdecke University, Witten, Germany; kai.hensel{at}uni-wh.de

Abstract

Technology is driving a revolution in healthcare, but paediatric services have not fully harnessed the potential. Digital health solutions yet to achieve their promise in paediatrics include electronic health records, decision support systems, telemedicine and remote consultations, despite the accelerated uptake during the COVID-19 pandemic. There are also significant potential benefits in digitally enabled research, including systems to identify and recruit participants online or through health records, tools to extract data points from routine data sets rather than new data collection, and remote approaches to outcome measurement. Children and their families are increasingly becoming digital health citizens, able to manage their own health and use of health services through mobile apps and wearables such as fitness trackers. Ironically, one barrier to the uptake of these technologies is that the fast pace of change in this area means the evidence base behind many of these tools remains underdeveloped. Clinicians are often sceptical of innovations which appear largely driven by enthusiasts rather than science. Rigorous studies are needed to demonstrate safety and effectiveness. Regulators need to be agile and responsive. Implementation needs adequate resource and time, and needs to minimise risks and address concerns, such as worries over losing human contact. Digital health care needs to be embedded in medical education and training so that clinicians are trained in the use of innovations and can understand how to embed within services. In this way, digital paediatrics can deliver benefits to the profession, to services and to our patients.

  • paediatrics
  • healthcare economics and organisations
  • health services research
  • information technology
  • technology

Data availability statement

Data sharing not applicable as no data sets generated and/or analysed for this study. Not applicable.

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The new age: a digital revolution is underway

The non-medical world is already in the middle of a digital revolution. Digital medicine undoubtedly holds great promise, but the paediatric healthcare service is mostly falling short of widely benefitting from novel digital technologies. While the healthcare innovation market is booming, a recent study report suggested less than 1% of this investment is on children’s digital health.1 The Digital Medicine Society defines digital medicine as ‘a field, concerned with the use of technologies as tools for measurement, and intervention in the service of human health’. This includes technology supporting administrative functions such as electronic records systems, digital health services such as remote consultations or remote monitoring of sensors or wearables, as well as digital tools (including health apps) that provide diagnosis, treatment or self-management, decision-support tools, and a range of data analytical tools which are increasingly used to derive new knowledge from large, often linked, data sets. Technology has been driving a revolution in healthcare. Digital health tools have the vast potential to improve our ability to accurately diagnose and treat disease, to harness data sets to increase our understanding of epidemiology and pathogenesis, and to enhance the delivery of healthcare for the individual.

One key example of a missed chance for paediatric healthcare is the electronic medical record (EMR). Even though its utilisation is increasing, most paediatricians are either working with suboptimal EMRs or are not using EMRs with even basic paediatric functionality, such as weight-based dosing or preventive care decision support.2 A survey addressed to 709 US American Academy of Pediatrics members in 2016 revealed that 31% used only basic features and only 16.9% used fully functioning EMRs including paediatric functionality. Forty-one per cent either used EMRs lacking basic functionality or used no EMRs at all. The risk to child health is that the opportunities of EMRs to reduce medical errors, improve guideline adherence, support decision-making and diagnosis are not being realised for this population. Paediatric healthcare needs a stronger lobby in the EMR technology design and production industry. The use of telemedicine for remote consultation and care, although recently accelerated in the context of the COVID-19 pandemic, is another example of a largely—as yet—untapped opportunity for child health.

Second, there are missed chances also for paediatric research. Patient (and professional) participation in paediatric clinical trials is suboptimal.3 Digital solutions could improve this. At a basic level, electronic records systems can help identify eligible participants; with more sophistication, personal health records allow potential participants (or their parents) to indicate a willingness to take part in a study; real-world evidence studies can use data points from routine records rather than collecting patient information de novo. Health websites and social media can be used to not only advertise research studies, but also to host study recruitment, including taking participants through a process of online consent and screening and baseline measures. But these tools are only being adopted slowly and in ad hoc fashion. A more systematic and connected approach is needed to fully harness digital platforms for all research, and in paediatric in particular this can help provide a broader representation of children in clinical trials, and allow more flexible and convenient participation (for example, remote outcome measurement reduces potential disruption to education and home life by avoiding the need to travel to a healthcare site).

Third, as individuals increasingly become digital health citizens, using the internet and consumer tools such as mobile phones or fitness trackers to manage their own health and healthcare, health services need to understand how to harness the willingness and ability of patients and families to engage with and use such technologies. These may (for example) be wearables which track physiological function, patient-facing health apps or websites providing information or self-management tools, or health portals with access to health records and data such as test results or appointments. However, children and their families may have privacy, security and trust concerns regarding digital tools.4 There is a need to help patients and families navigate these technologies, understand issues of safety and effectiveness as well as trust and data security, and support their use for maximum benefit. Initiatives such as consumer app evaluation platforms may support this, alongside approaches which provide end users (children and families) with the skills to make their own judgements. Healthcare professionals also have a role as advocates, and can share information and encourage use of appropriate tools.

Paediatric healthcare providers and biomedical researchers should embrace digital innovations to improve child health

The digital health market is ever expanding. Digital technologies—from basic decision tools to artificial intelligence ‘chatbots’ and sophisticated wearables—are readily available. Table 1 provides an overview of benefits and limitations for key digital technologies and features specific examples of digital medicine solutions in the field of paediatric healthcare. To date, the evidence base for many of these tools has remained relatively underdeveloped. Digital technologies are often driven by enthusiasts, and not necessarily by unmet medical need, and high-quality research studies demonstrating benefit are uncommon.5 This is an emergent industry dominated by small or medium-sized enterprises and not by ‘big pharma’, and long-term research investment is unusual. At the same time, the pace of change in digital health often means that an intervention will have evolved by the time a long-term trial has reported. All of this means that where studies exist, they tend to be small scale and short term, with proxy measures often replacing longer term clinical outcomes. Alongside the usual challenges of acceptability, efficacy and safety, digital tools must also address issues of information security, data privacy and interoperability. It is important to also acknowledge that many clinicians remain sceptical of the benefits of digital tools and successful implementation requires engaging with such stakeholders and demonstrating the benefits to their own work.

Table 1

Synopsis of key digital health technologies—benefits, limitations and illustrative examples of utilisation in paediatric healthcare

A shining example of a medical wearable with undoubted proven clinical benefit is the real-time continuous glucose monitoring device. Multinational, multicentre randomised controlled trials have demonstrated reduced exposure to prolonged or severe hyperglycaemia and hypoglycaemia and less severe adverse events, both in adolescents6 as well as in preterm neonates.7 Similarly, Palmer et al recently provided an impressive real-world example for the enormous potential of integrated antenatal care using telehealth.8 Analysing >20 000 consultations of 2292 women giving birth in an interrupted time-series design demonstrated the successful reduction of in-person consultations by 50% without compromising pregnancy outcomes.

What the field needs now is to bridge the gap between emerging technologies and shortcomings in healthcare delivery. The response to the COVID-19 pandemic has demonstrated advantages that these technologies can hold, including the widespread use of remote consultations, the harnessing of mobile health apps for contact tracing and disease surveillance, and rapid studies of linked data sets to derive new knowledge on an emerging issue.

A rocky road ahead? Limitations and barriers, and how to overcome them

These emerging technologies must be evaluated, kept valid, updated, free of bias, and specifically adapted for paediatric and neonatal healthcare. This requires scientific rigour, quality control mechanisms, transparency and essentially a paediatric advocate through each step of the entire process from initial tool design to its widespread clinical implementation. Minimising patients’ risks and adequate handling of personal sensitive data are essential. The feared perceived loss of the human touch’ and the black box momentum—the uncertainty regarding specific mechanisms of action—of novel technologies that many digital innovations hold, raise potential safety concerns that ought to be thoroughly addressed to improve security and trust. Regulators were initially slow to respond to the digital revolution in healthcare but agencies such as the Food and Drug Administration in the USA and the Medicines and Healthcare products Regulatory Agency in the UK now have clear guidance on the use of software as a medical device, with a focus on safety and protecting patients from harm. Ethical, regulatory, financial and legal issues, in general and in relation to children specifically, need to be clarified by the respective authorities and specialist (paediatric) societies. We also need clinicians to take action. Digital medical technologies should be more embedded within medical education and specialty training. This could include the evidence base for these tools, and the research and implementation issues that clinicians need to consider. Academic clinical fellow pathways and specialty training days can provide some of the mechanisms for this embedding. Further, continuous professional development of senior medics should encompass novel interventions and the training required for their use, for example, in form of a virtual digital paediatrics training series, at national paediatrics meetings or in clinical simulation centres. The digital paediatrics revolution needs to come from within the specialty, in other words, be driven by the paediatric healthcare providers. In the 2020s, pen-and-paper medicine (and the associated avoidable errors and handicaps) should be a matter of the past.

There are some blurred regulatory boundaries: devices which claim to support wellness rather than a medical need can sidestep regulation as a medical device; tools which claim to be for information only (rather than to guide treatment) may have reduced scrutiny. But the regulatory landscape is becoming clearer and health technology assessment agencies such as National Institute for Health and Care Excellence in the UK are now developing programmes of work to appraise the clinical effectiveness and cost-effectiveness of digital tools. Quality assessors such as the Care Quality Commission in the UK are also developing standards for assessing digital services. Paediatric services need to understand the factors that support successful implementation of digital health technologies. These include having sufficient time and resource dedicated to making implementation happen—healthcare innovation rarely occurs by chance and needs to be supported by project management. Ideally, end users (and other stakeholders) need to be involved in the design of tools and throughout the development journey; these users also need to understand the benefits to their work of adopting the new technology, and be provided with training in how to use any new tools. Implementation approaches should be tailored for local contexts and any local barriers identified early and addressed. Information governance and interoperability issues are key. Initial adoption is not enough, ongoing maintenance is also required and needs to be managed and monitored to support full embedding of innovations. Evidence of real-world effectiveness, using routinely collected data from implementation settings, can support further uptake.

Paediatric medicine is still largely untouched by the digital potential of next generation technical innovations. But digital technologies will become a cornerstone of medical research and everyday healthcare in the (not so far) future. The time has come to embrace the concept of ‘digital paediatrics’—child-centred digital medicine solutions—so that the profession can grow further in a timely manner and, ultimately, our patients will benefit from the digital boost with sustainably improved outcomes and better overall child health.

Data availability statement

Data sharing not applicable as no data sets generated and/or analysed for this study. Not applicable.

Ethics statements

Patient consent for publication

References

Footnotes

  • Contributors KOH wrote the initial draft of the manuscript and created the table. JP helped writing the manuscript.

  • Funding JP receives funding from the National Institute for Health Research (NIHR) Oxford & Thames Valley Applied Research Collaboration (ARC) at Oxford Health NHS Foundation Trust.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.