The COVID-19 pandemic and responses to it have changed the way we live. Digital disruption is central to this transformation facilitating the realignment of boundaries between our private, or home-based, and public lives. Video-conferencing applications delivered activities as diverse as the boardroom, classroom, gym, café and even the pub quiz into our homes. Work-life balance shifted as many managed work at home, whilst losing agency in directing their lives outside.
Australians have long embraced digital technology in their lives: shopping and banking online, monitoring activity with wearable trackers and smart watches, navigating travel, and social lives with platforms and apps like TripAdvisor and Urbanspoon. The digital revolution in healthcare, however, lagged behind until the imperatives of the COVID-19 pandemic accelerated the rollout of previous commitments to e-prescribing and Telehealth. The healthcare sector turned to private providers to innovate and develop new digital application such as the COVIDSafe app, or less controversially, the Australian WeGuide app was customised to monitor participants’ symptoms in the international BCG COVID-19 vaccine trial, BRACE.
During this period of rapid technological transformation the CHF Consumers’ Commission took the temperature of digital health to diagnose what consumers’ recent experiences prescribe for future developments. The lessons of this experience can be examined under the headings of equity, agency and trust: three principles or pillars to underpin future digital health policies and provision.
Equity in digital health concerns the access and digital literacy of consumers and providers. Telephone or video consultation offers convenience for many, reducing financial and physical costs such as parking, loss of earnings, distance travelled, and reduces risk for the immobile, the infirm and the immune-compromised. Access to digital devices and reliable and affordable internet access is necessary, however, for equitable digital inclusion.
… adequate training is needed for multiple different technologies.
Existing social and economic inequalities are magnified for consumers without appropriate devices, phone and data packages, and private consulting spaces to facilitate their use. Capacity also differs between health service providers. Access to technology can be hierarchical with consultants using cameras whilst nurses, allied and primary health care workers may be left with landlines. Digital literacy varies between consumers and providers: adequate training is needed for multiple different technologies. Digital platforms need to be interoperable between providers and consumers, whilst special consideration should be given to the needs of culturally and linguistically diverse groups.
Consumer agency is a fundamental principle of person-centred, self-managed care and digital technology offers opportunities to turn this into a reality. Without information consumers cannot be empowered to use their agency. Web-based health portals offer more reliable and moderated sources of health information than Dr Google and were used to update the public with real time data on COVID cases and responses. They should also be used to present transparent and reliable information about conditions, treatment pathways and providers for consumers seeking optimal care.
Just as COVIDSafe was intended to protect public health by sharing information between people and governments, digital health apps have the potential to facilitate communication between consumers and providers. By embedding digital patient reported experience and outcomes measures (PREMs and PROMs) as standard pre and post consultation exercises, consumers can use their agency to optimise care that has value for them. Digital health navigators can also assist them to effectively coordinate and traverse their way through the landscape of Australian healthcare.
Exercising agency requires choice which was often lacking in the rapid rollout of Telehealth. Consumers support the continued and enhanced use of Telehealth, but it needs to be an integrated part of healthcare chosen as a complementary service in partnership with providers. It is a substitute where there are no alternatives, or, it may be the best medium for the circumstances and needs of clinicians and consumers alike.
The virtual consult needs to be in a safe space for all.
Trust, with its supporting pillars of quality and safety, is the third principle underpinning digital health. Consumers are suspicious of digital technologies if concerns about privacy, transparency, and quality outweigh their willingness to share data about their private lives in the interests of public health. Controversy about COVIDSafe demonstrated this, but privacy is also a concern for Telehealth. Bringing the public world of healthcare directly into the private realm of the home has many advantages but means clinicians and consumers may be overheard by colleagues and fellow householders. The virtual consult needs to be in a safe space for all.
Whilst governments want consumers to be transparent and trusting with personal data by allowing COVIDSafe to track their movements, or use My Health Record to summarise their care, governments and clinicians need to reciprocate. They should trust and empower consumers by transparently sharing reliable data about conditions, treatments, service monitoring and evaluation using accessible digital platforms as part of person-centred, person-led care.
Quality and safety are prime concerns for digital health. Telehealth consultations must be safe and fit-for-purpose given the conditions and locations of consumers and providers: physio on the phone may not be effective. Telehealth can offer rapid and remote responses to need, but clinicians may miss signs and subtleties of physical or emotional distress. Digital literacy training needs to include prompts for effective and quality-assured communication between clinicians and consumers.
The Commonwealth’s conception of digital health has primarily concentrated on Telehealth but, Telehealth is to digital health as email is to communication: just one way of connecting and delivering information. If we focus too narrowly on Telehealth, and not boldly or broadly on the opportunities and potential presented by recent, rapid technological transformation, digital health in Australia could become a legacy platform outrun by the digital revolution elsewhere in our lives.
Digital disruption has been a valued and positive experience mitigating, for many, the potential for pandemic pandemonium in healthcare. My prescription is for the principles of equity, agency and trust to underpin future digital health policies and practises to be developed and implemented as a digital health strategy in partnership with consumers. Combining consumer experience and insight with public and private investment and innovation can deliver a robust digital healthcare revolution for all Australians.
About the author
Susannah Morris is a social policy expert by profession who now works to improve experiences and outcomes of person-centred and person-led care following her own diagnosis with cancer. As a social scientist, she is committed to evidence-based policy and as a health consumer, she advocates for and presents the perspectives of those who may not have a voice with Breast Cancer Network Australia, the Health Consumers’ Council of WA and the Consumers’ Health Forum of Australia.