Implementing 21st century "end-to-end" and technology-enhanced care for young people.

Abstract

The advent of health services specifically designed for young people with emerging anxiety, mood or psychotic disorders is the most appropriate response to the peak age of onset of these disorders, the evidence favouring early intervention, and the problems with access to clinical care1. The primary goal of these services is to provide an attractive “front door” that engages youth at risk of progression to major disorders. The available data suggest that they are largely fulfilling this basic purpose1. While health service innovations alone are unlikely to reduce population-level disease burden, it remains the principal goal of clinical care to provide high-quality and more personalized interventions. If the more substantive aim is to halt or even reverse illness course and, thereby, prevent premature death or long-term functional impairment, then it is timely to ask: are the new youth services optimally designed to deliver these outcomes? To date, national health systems have never seriously moved to implement an integrated “supply-chain” of clinical services, operating across the spectrum from indicated prevention to continuing specialist care. By contrast, the traditional response to the ever-increasing demand is to add new stand-alone service “blocks” to the existing disconnected structures. New service “blocks” are often based on historic concepts of primary, secondary and specialist care. Typically, access to specialist services remains severely restricted, being reserved largely for those who have already progressed to later stages of illness. This traditional hierarchy of care has been viewed as the most equitable way to ensure basic population coverage for very common, persisting or chronic conditions. However, these pyramidal structures often ignore the reality that early intervention only works when delivered early in the course of illness. While most new services focus on increasing access to primary care, the reality is that enhanced access alone does not deliver improved outcomes. Analyses of longitudinal data from primary-care based youth services indicate both the continued progression of those with early to later stages of mood and psychotic disorders2, and that the majority of those who enter with impaired social, educational or occupational function do not make substantive long-term gains3. So, is it time to rethink our assumptions and seriously consider alternative options? Digital health services are rapidly developing in new directions, with a variety of stand-alone or integrated models of clinical care4, 5. Importantly, as private investments in these more personalized alternatives are also growing substantially, we are likely to see considerable competition and disruption (i.e., “uberization”) of mental health care in both developed and developing economies5. Much of this will be dictated by financial considerations rather than evidence of superior effectiveness. So, are we really closing in on our main target, namely, “Right Care, First Time, Where You Live”4? In reality, this would require the combination of much more innovative clinical models with new technology-enhanced modes of practice4. Beyond the concept of supporting an integrated “supply-chain”, a fundamental consideration is the extent to which new digital technologies can support effective implementation of each element of this enhanced care model4. “Right care” means skilled assessment and choice of interventions that are highly personalized. It does require multidimensional assessment, including elements such as lifetime trajectories, clinical stage of illness, pathophysiological mechanisms, comorbidity, recognition of social and cultural setting, and personal choice4. Much of this material can be collected efficiently through data entered directly by service users and their families4. It is greatly assisted by using new (passive and active) personalized devices that monitor in vivo motor activity, sleep, social connections, mood, physiological arousal, cognitive performance, metabolic health, and engagement with education or employment5. “First time” rejects the typical health services mantra of “stepped care” in favour of “staged care”6. That is, it promotes immediate specialized care for those presenting with first episodes of major disorders. Technology-enhanced triage systems that bring timely specialized clinical assessment to the start of the service encounter can assist to make this critical task much more efficient. They do this by focusing video-enhanced specialist assessment on those at highest risk of illness progression or suicidal behaviour7. “Where you live” really matters. Socio-economic and geographical disadvantages are real. The disparities in the distribution of services (urban vs. rural, wealthy vs. disadvantaged regions) have major impacts on illness course. The provision of the whole range of services from self-care right through to more specialized interventions, based largely on new technologies, may become possible for those communities that have been most neglected8. It will require new workforces (“digital navigators”) and a much stronger commitment to telecommunication systems as essential “health” infrastructure in the 21st century. Tied to the notion of “highly personalized” interventions is that of measurement-based care. We need smart, bidirectional and interactive systems that actively engage young people and collect data directly from service users, families, carers, clinicians and personalized devices4. Most importantly, these data should then be used quickly to identify those who do not respond, or deteriorate, early in the course of illness2, 3. Rather than simply deploying new service “blocks”, it may be better to focus on what a well-coordinated, regionally-organized, technology-enhanced, end-to-end “supply-chain” looks like in the 21st century. New dynamic modelling (at the population level) and discrete event approaches (at the service level) can be employed to bring rigour to national or regional health service planning9. It can also inform allocation of limited workforces, alongside financial and technical resources9. Modern, real-time data collection systems can also be used to embed clinical research within these new systems5. While the review by McGorry et al1 does draw attention to the potential of new digital platforms, a less appreciated aspect of digital innovation is the large potential impact of technology-enhanced care coordination. This not only assists to put young people at the centre of the care journey, but focuses on reducing unnecessary delays in providing sophisticated clinical assessment and effective interventions9. In less privileged settings, we are already seeing a willingness to use new technologies that are not limited by traditional geographical barriers7. We can no longer simply accept the notion that specialist care is a luxury item reserved for those in developed countries, while the rest will have to make do with “universal primary care”. These digitally enhanced systems have a tremendous capacity to bring more personalized, specialized and coordinated care to those who have long been neglected. At this time, however, there is still much work to be done to determine whether new clinic-based or technology-enhanced systems, alone or in combination, can deliver substantive long-term improvements in the lives of young people with emerging mental disorders.