"Care finally came to me". These are the words we would hope to hear from someone who has long been excluded from essential healthcare. For many, especially those who are frail, homebound, or bedridden, and for people in remote First Nations communities, the arrival of care is more than a clinical transaction. It is the restoration of dignity, safety, and human connection.  (1,2,3)

A lost opportunity 

During the COVID-19 period, telehealth expanded rapidly in Australia and internationally. Studies on homebound populations have shown how virtual visits have helped reconnect people with their care teams after years of physical and social isolation. As restrictions eased, some of the most flexible models were rolled back, and much of that progress was lost. Across settings, the pattern is consistent. Access, continuity, and confidence in care improve when telehealth is simple, supported, and reliable. These gains fade when policies or funding remove support. 

Video on Telehealth for Frail Homebound and Bedridden People, #FHBP (1,2,3)

In Australia, the Medicare Benefits Schedule generally requires patients to have seen a general practitioner in person within the previous twelve months to qualify for many telehealth rebates. For those who cannot leave home safely, this requirement blocks access to the very service that could keep them well. More than half a million Australians are estimated to be homebound and often remain invisible in routine service planning. For this group, evidence links telehealth to fewer avoidable hospital visits, better symptom control, and lower rates of depression, anxiety, and loneliness. A significant policy gap remains because there is no national definition of “homebound,” which makes it more difficult to identify them and create targeted exemptions consistently. (1,2,3,4)

These access challenges extend beyond mobility and geography. Remote First Nations communities face many of the same delays and disruptions, compounded by the need for care that is culturally safe, community-led, and aligned with local priorities. In both groups, the barriers differ in form but not in effect. Essential healthcare is delayed, fragmented, or absent. When telehealth is co-designed with the people it is meant to serve, it reduces these gaps. Too often, however, promising models are temporary or underfunded and are withdrawn when priorities change, leaving those who benefit most without care again. (5)

Video on continuity of care for First Nation People

Bridging the digital health literacy divide

Digital health literacy is now recognised as a core determinant of equitable access. It refers to the ability of individuals, families, communities, and healthcare professionals to find, understand, and utilise digital health information and tools to enhance their health. The literature shows that gaps in digital health literacy are two-sided.

On the community side, people struggle with portals, passwords, small screens, and expressing complex needs through video or chat. Barriers arise from limited exposure to technology, low general literacy, disability, language, and cultural factors. In remote First Nations communities and among homebound people, cultural accessibility is as important as technical capability. If interfaces do not fit local languages, metaphors, and communication preferences, uptake remains low even when devices and connections are available.

On the workforce side, clinicians and managers may be unsure how to deliver safe, private, and effective virtual care. Some find it hard to integrate patient-generated data, consent workflows, or low-bandwidth options into everyday practice. Connectivity can be limited in rural clinics. Concerns about quality, privacy, and liability reduce consistent use. When both sides have gaps, exclusion compounds. A patient may have a device but not the support to use it, while a clinician is unsure how to adapt care safely to virtual formats.

Closing this divide requires person-centred strategies. Co-design and participatory research keep solutions relevant and acceptable. Equitable reach strategies make sure underserved groups are explicitly included, such as culturally and linguistically diverse communities, low-income households, digitally excluded people, rural and remote residents, and First Nations communities. Sustained engagement is supported by culturally safe interfaces, community-based digital health navigators, and regular improvement cycles. Workforce enablement comes from practical training, toolkits, and mentoring that translate evidence into daily workflows. Translational capacity building develops the skills of researchers, consumers, and services to move from pilots to large-scale, sustainable models. Evaluation must measure not only whether a consultation occurred, but whether it improved understanding, continuity, confidence, and trust. (1,2,3,4,5,6,7,8,9,10)

Frameworks for co-design and continuous evaluation

Transitioning from short-term pilots to durable services necessitates methods that integrate community participation with rigorous, ongoing evaluation. The literature points to two complementary frameworks that do this work together: PROLIFERATE and PROLIFERATE_AI.

PROLIFERATE

PROLIFERATE is a human-centred design and evaluation framework that brings patients, carers, clinicians, administrators, policymakers, and technology teams together as equal contributors. It builds continuous feedback into service delivery through structured cycles that ask three practical questions from every stakeholder’s point of view. Is the service acceptable in daily life? Can it be sustained without creating undue burdens? Can it scale to new settings without losing effectiveness? In practice, teams gather what people find valuable or difficult, identify where processes fail, and adjust the model before small problems become large barriers. The framework also emphasises key person-centred constructs that matter for equity (Understanding, Emotional Response, Barriers, Motivation, and Optimisation), including co-design and participatory research, equitable reach, sustained engagement, workforce enablement, translational capacity building, and evaluation of both process and impact. These constructs make sure telehealth is not only built with the community, but also reaches those who have been left out the longest and keeps them engaged over time.

PROLIFERATE_AI

PROLIFERATE_AI adds an analytic layer that listens to everyone involved and turns their experience into timely, usable insights. It uses a short survey across five core constructs of implementation quality. Understanding asks whether people grasp what the service is and how to use it. Emotional response asks how they feel about it, including confidence and safety. Barriers records what gets in the way. Motivation captures willingness to continue using the service. Optimisation asks for suggestions to improve fit and performance. The survey blends simple ratings with free-text and short discussions with local experts to capture context.

Rather than sitting on a shelf, these data are used to estimate how well the implementation is going and where it is most at risk. Simple statistical simulation and Bayesian updating enable teams to visualise scores for each construct, along with their associated uncertainty, across time and groups. Results are displayed in clear tables and charts that compare experiences by site and by subgroup, such as Elders, carers, or people with limited literacy. Because the same questions are asked of community members, clinicians, administrators, and technical staff, equity questions become visible.

For example, a program might show good overall adoption but lower Understanding and higher Barriers for remote users or newly onboarded clinicians. PROLIFERATE_AI then supports “what-if” thinking. Teams can test the likely impact of candidate changes, such as adding language options, extending navigator hours, simplifying onboarding steps, strengthening consent prompts, or enabling low-bandwidth audio-first modes. Those forecasts guide co-design actions to choose targeted solutions, implement them, and reassess quickly. The evaluation becomes a living process that supports continuous adaptation and shared decision-making.

Used together, PROLIFERATE and PROLIFERATE_AI connect person-centred co-design with practical analytics. They help services adapt to changing needs and contexts, which is essential for populations whose circumstances can shift quickly and for teams who must keep equity at the centre of every change. (9,10)

Theoretical foundations that keep care human

Technology can widen access, but it does not define quality on its own. Two complementary lenses provide a shared language for what good care should achieve and how to measure it over time: the Fundamentals of Care Framework and Caring Life Course Theory.

Fundamentals of Care Framework

The Fundamentals of Care Framework describes care as an integrated process with three connected dimensions and clearly defined subcomponents.

• Relationship sets the foundation. Its core relational competencies include trust, focus, anticipation, knowing the person, and ongoing relational evaluation. In simple terms, clinicians and teams must be attentive, anticipate needs, understand the individual beyond their diagnosis, and continually assess whether the relationship is working for the person and their family.

• Integration of care requires that physical, psychosocial, and relational needs be addressed together, not in isolation. Good telehealth does not only check symptoms. It also supports emotional well-being, dignity, learning, goal setting, and connection. It recognises that empathy and active listening are part of safe and effective care.

• Context of care recognises that policies, resources, leadership, culture, and infrastructure shape whether good relationships and integrated care are possible. Rules like the twelve-month in-person requirement directly influence who can enter the system. Staffing, connectivity, private spaces for calls, and supportive leadership make a difference to everyday practice.

Evidence shows that context matters through the relationship. Investments in resources, culture, and leadership are necessary, but they translate into better integrated care when the relationship competencies are strong. This logic is especially relevant for telehealth, where small design choices can either build a connection or erode it.  (11, 12)

Caring Life Course Theory

Caring Life Course Theory places care within a person’s whole life trajectory. Needs, resources, agency, and vulnerabilities change across stages of life and through transitions such as diagnosis, disability progression or recovery, bereavement, relocation, and changes in work or study. Networks of care expand and contract as family roles, community supports, and services shift. For design, the implication is practical and concrete. Telehealth that works during an acute episode may need to adapt when mobility improves, when a new caregiver steps in, when an Elder has cultural obligations, or when a young adult returns to study. Life course thinking invites planning for change from the start, so that services remain relevant and respectful over time. (13, 14)

Together, these lenses steer telehealth toward what matters. Are relationships strengthening or weakening? Are physical, psychosocial, and relational needs addressed together? Does the policy and infrastructure context enable inclusion, or does it quietly exclude the people who need care most?

Toward a human-centred, AI-enabled design for equity

Human-centred, AI-enabled design is about rethinking services to enable technology to promote equity. It starts with people’s lived realities and builds the workflow, policy settings, and data methods around those realities.

In practice, telehealth for homebound people and for First Nations communities should default to options that respect language, culture, and local preferences. It should support low-bandwidth modes when needed, welcome family or community representatives into consultations if desired, and offer flexible scheduling that matches community routines. AI can help by identifying when and where people begin to disengage, surfacing reports of communication mismatches, and alerting teams to clusters of failed connections in specific locations. These are prompts for action within a human process, not automated decisions.

Building and sustaining such models require capabilities across the entire service ecosystem. Clinicians need training and support for virtual communication, safety, and documentation. Administrators require clear procedures for obtaining consent, maintaining privacy, onboarding users, scheduling tasks, and following up on digital workflows. Technical teams need to monitor reliability and security and explain design choices in plain language. Community organisations need resources to host local digital navigators who can sit with families and make the first call feel safe. Policymakers need to align rebates and rules with the realities of people who cannot travel, including removing in-person requirements that exclude homebound people by design and formalising a national definition of “homebound” to enable fair access.

Video from Health Translation SA' Spotlight Series on Engaging people who are FHBP and intellectual disabilities

This is what we want to achieve now. By embedding PROLIFERATE and PROLIFERATE_AI, informed by the Caring Life Course Theory and the Fundamentals of Care Framework, we can ensure that telehealth models are continually adapted to meet changing needs across the lifespan and within diverse contexts. When such knowledge and procedures are embedded, the roles of communities, clinicians, service managers, and policymakers connect through a shared feedback loop. Community experiences and service data are turned into clear, actionable insights. These insights guide co-designed changes that are tested, refined, and measured for impact. Over time, programs become more acceptable, sustainable, and scalable because adaptation is built into the design from the outset, rather than being an afterthought. This is how we can move from pilots to real-world practice and from partial access to genuine inclusion.

From margins to mainstream

Telehealth can reduce unnecessary hospital use (e.i, ramping), improve mental well-being, and reconnect people who have been excluded by distance, mobility, policy, or design. To realise that promise, systems need to treat virtual care as a core modality, not an exception. They need to remove rules that block entry for those who cannot travel, invest in digital health literacy on both sides of the screen, and use human-centred evaluation methods that adapt as needs change.

Video on How PROLIFERATE AI Makes Services Work

The combination of co-design, continuous evaluation, the Fundamentals of Care Framework, and Caring Life Course Theory offers a clear pathway. PROLIFERATE and PROLIFERATE_AI make that pathway practical by turning lived experience into timely guidance for improvement and by helping teams test changes before they scale. The tools exist, and the people most affected have explained what works for them. What is needed now is the will and resources to bring these elements together so that care moves from the margins into the mainstream, in Australia and in other countries facing similar patterns.

If we get this right, more people will be able to say with confidence, “care came to me when I needed it most.”

References  

1. Pinero de Plaza, M. A., Beleigoli, A., Mudd, A., Tieu, M., McMillan, P., Lawless, M., Feo, R., Archibald, M., & Kitson, A. (2021). Not Well Enough to Attend Appointments: Telehealth Versus Health Marginalisation. In M. Merolli, C. Bain, & L. K. Schaper (Eds.), Healthier Lives, Digitally Enabled - Selected Papers from the Digital Health Institute Summit 2020: Healthier Lives, Digitally Enabled (pp. 72-79). Article 13 (Studies in Health Technology and Informatics; Vol. 276). IOS Press. https://doi.org/10.3233/SHTI210013
2. Pinero de Plaza, M. A., Beleigoli, A., Brown, S., Bulto, L., Gebremichael, L., Nesbitt, K., Tieu, M., Pearson, V., Noonan, S., McMillan, P., Clark, R., Hines, S., Kitson, A., Champion, S., Dafny, H., & Hendriks, J. (2022). Effectiveness of telehealth versus standard care on health care utilization, health-related quality of life, and well-being in homebound populations: a systematic review protocol. JBI evidence synthesis, 20(11), 2734-2742. https://doi.org/10.11124/JBIES-21-00410
3. Pinero de Plaza, M. A., Gulyani, A., Bulto, L. N., Allande Cusso, R., Pearson, V., Lange, B., Marin, T., Gebremichael, L., Brown, S., Dafny, H., Sajeev, S., Bulamu, N., Beleigoli, A., Nesbitt, K., McMillan, P., Clark, R., Tieu, M., Kitson, A., Champion, S., ... Hendriks, J. M. (2025). Telehealth as a Care Solution for Homebound People: Systematic Review and Meta-Analysis of Healthcare Utilization, Quality of Life, and Well-Being Outcomes. Health and Social Care in The Community, 2025, Article 7224151. https://doi.org/10.1155/hsc/7224151
4. Pinero de Plaza, M. A., Beleigoli, A., Kitson, A., McMillan, P., & Javier Barrera Causil, C. (2024). Piloting a Big Data Epidemiology Approach to Support Frail, Homebound, and Bedridden People. In J. Bichel-Findlay, P. Otero, P. Scott, & E. Huesing (Eds.), Studies in Health Technology and Informatics (Vol. 310, pp. 1292-1296). (Studies in health technology and informatics). IOS Press. https://doi.org/10.3233/SHTI231173
5. Pinero de Plaza, M. A., Gebremichael, L., Brown, S., Wu, C. J., Clark, R. A., McBride, K., Hines, S., Pearson, O., & Morey, K. (2023). Health System Enablers and Barriers to Continuity of Care for First Nations Peoples Living with Chronic Disease. International Journal of Integrated Care, 23(4), Article 17. https://doi.org/10.5334/ijic.7643
6. Nesbitt, K., Champion, S., Pearson, V., Gebremichael, L. G., Dafny, H., Ramos, J. S., Suebkinorn, O., Pinero de Plaza, M. A., Gulyani, A., Du, H., Clark, R. A., Beleigoli, A., & On behalf of the NHMRC Country Heart Attack Prevention (CHAP) Partnership Project Team (2025). The effectiveness of interactive cardiac rehabilitation web applications versus usual care on programme completion in patients with cardiovascular disease: A systematic review and meta-analysis of randomised controlled trials. Journal of Telemedicine and Telecare, 31(4), 475-486. https://doi.org/10.1177/1357633X231201874
7. Beleigoli, A., Dafny, H. A., Pinero de Plaza, M. A., Hutchinson, C., Marin, T., Ramos, J. S., Suebkinorn, O., Gebremichael, L. G., Bulamu, N. B., Keech, W., Ludlow, M., Hendriks, J., Versace, V., & Clark, R. A. (2024). Clinical effectiveness of cardiac rehabilitation and barriers to completion in patients of low socioeconomic status in rural areas: A mixed-methods study. Clinical Rehabilitation, 38(6), 837-854. https://doi.org/10.1177/02692155241236998
8. Beleigoli, A., Foote, J., Gebremichael, L. G., Bulamu, N. B., Astley, C., Keech, W., Tavella, R., Gulyani, A., Nesbitt, K., Pinero de Plaza, M. A., Ramos, J. S., Ludlow, M., Nicholls, S. J., Chew, D. P., Beltrame, J., & Clark, R. A. (2024). Clinical Effectiveness and Utilisation of Cardiac Rehabilitation After Hospital Discharge: Data Linkage Analysis of 84,064 Eligible Discharged Patients (2016–2021). Heart Lung and Circulation, 33(7), 1036-1045. https://doi.org/10.1016/j.hlc.2024.01.018
9. Pinero de Plaza, M. A., Yadav, L., & Kitson, A. (2023). Co-designing, measuring, and optimizing innovations and solutions within complex adaptive health systems. Frontiers in Health Services, 3, Article 1154614. https://doi.org/10.3389/frhs.2023.1154614
10. Pinero de Plaza, M. A., Lambrakis, K., Marmolejo-Ramos, F., Beleigoli, A., Archibald, M., Yadav, L., McMillan, P., Clark, R., Lawless, M., Morton, E., Hendriks, J., Kitson, A., Visvanathan, R., Chew, D. P., & Barrera Causil, C. J. (2025). Human-centred AI for emergency cardiac care: Evaluating RAPIDx AI with PROLIFERATE_AI. INTERNATIONAL JOURNAL OF MEDICAL INFORMATICS, 196, Article 105810. https://doi.org/10.1016/j.ijmedinf.2025.105810
11. Pinero de Plaza, M. A., Allande Cusso, R., Conroy, T., Porcel-Gálvez, A. M., Feo, R., Chipchase, L., Adams, A. M. N., Parr, J., & Kitson, A. (2025). Exploring the Fundamentals of Care Framework through a Predictive Model: Insights from a Pilot Study in Australian Healthcare Settings. Abstract from 2025 ILC Annual International Conference, Genoa, Italy. https://ilccare.org/event/2025-ilc-annual-international-conference/
12. Pinero de Plaza, M. A., Allande Cusso, R., Conroy, T., Porcel-Gálvez, A. M., Feo, R., Chipchase, L., Adams, A. M. N., Parr, J., & Kitson, A.  Piloting Structural Equation Modeling for Fundamental Care Decision-Making Across Healthcare Settings, 03 April 2025, PREPRINT (Version 1) available at Research Square https://doi.org/10.21203/rs.3.rs-6365026/v1
13. Pinero de Plaza, M. A., Hutchinson, C., Beleigoli, A., Tieu, M., Lawless, M., Conroy, T., Feo, R., Clark, R. A., Dafny, H., McMillan, P., Allande-Cussó, R., & Kitson, A. A. (2025). The Caring Life Course Theory: Opening new frontiers in care—A cardiac rehabilitation example. Journal of Advanced Nursing, 81(8), 5163-5180. https://doi.org/10.1111/jan.16312
14. Pinero de Plaza, M. A., Hutchinson, C., Beleigoli, A., Tieu, M., Lawless, M., Conroy, T., Feo, R., Clark, R. A., Dafny, H., McMillan, P., Allande Cusso, R., & Kitson, A. (2024). Strengthening Care Networks: Applying Caring Life Course Theory to Enhance Cardiac Rehabilitation through Social Network Analysis. 24. Poster session presented at Australian Social Network Analysis Conference 2024, Brisbane, Australia. https://static1.squarespace.com/static/59f16003b7411c33dcecf032/t/67351c8dfb0bbc1dc76b7c8d/1731533983941/ASNAC-2024-Program+1411.pdf