Introduction by Croakey: The coronavirus pandemic and Royal Commissions into aged care and mental health show that we do not yet have a way of navigating the health system in a way that connects patients “with the right person with the right skills in the right place at the right time and at the right cost”, write Siân Slade and Peter Brooks.
Their article, originally published at John Menadue’s Pearls and Irritations, shows the opportunity of taking a systems approach in patient navigation for Australian health consumers, drawing inspiration and lessons from Harlem’s ‘father of navigation’ Harold Freeman and HIV/AIDS patient activism and looking to take advantage of COVID-19’s role as both a disruptor and leveller across silos.
Siân Slade and Peter Brooks write:
The CSIRO Future of Health Report cites the importance of patient-centred healthcare but the current state is that the Australian healthcare system is cited nationally and globally as too complex to navigate.
Finding the consumer in the current system is likened to a game of Where’s Wally.
In the 1990s, patient activism in HIV/AIDS was a driving force of change and political voice in the sector. The pervading mantra was “the best way to predict the future is to invent it”.
The healthcare system can be depicted in the shape of a pyramid across levels (community, primary, secondary and tertiary care).
The general public live and access services in the bottom and largest level of the pyramid. We access ‘close to home care’ in the community through services of our general practitioner or allied health team.
Where needed, we may be referred into secondary care services in hospital. For particular needs and specialties, we may be referred into tertiary care.
Often-times we, whether as members of the public or as workers in healthcare, have no real understanding of the linkages between the services let alone all of the services available, the referral mechanisms or timelines or the true cost of those services.
It is also hard to know whether the care quality is good, poor or indifferent and what line of recourse we have, if any, if things are not going the way we think they should.
Finding our voices
Given how important health is at an individual and population level, there is no comprehensive education on health and the healthcare system. It is not a standard subject in schools although a curriculum does exist for health and wellness.
As patients, we simply access what we need when we need it – until some crisis, a heart attack, strange lump or accident, flings us into the melee of a system that we find we neither understand nor empowers us.
As clinicians and workers in the health system, do we actually ever appreciate the complexity of the health system until we find ourselves, friends or loved ones, unwittingly in the middle of it?
When we find ourselves in this position, how do we ensure we find our voice? How do we feel like we matter, especially when staff are so busy?
Is optimal care measured by a clinical result, how someone makes you feel – or both? How are these outputs captured, at individual and population levels and who keeps “the system” accountable?
Every day millions of Australians come into contact with the health system. On any average day 830 babies are born and 430 people die; 400 people are diagnosed with cancer, 100 people have a stroke and 1,460 people are hospitalised due to injury. On any average day, 406,000 visit a GP.
These numbers represent people and their families across nationalities and sociodemographic groups in urban, rural and remote locations. If the future is personalised care, how do we measure, aggregate and analyse those individual experiences across the levels of healthcare at a population level to understand the true current state?
Bridging the gap: patient or consumer?
The problem of health system complexity is ongoing, with unconnected silos everywhere and the problem of navigation has been smouldering for decades.
Every so often a disruptor happens creating an opportunity to challenge the status quo. The problem is that these happen in silos and do not pervade at a system level.
Over 20 years ago HIV/AIDS was a disruptor that created a global unity in the community impacted. It was a model of cultural change in collaboration, patient activism and technological advance; but the learnings never scaled to a strategic health-systems level.
In 2020 however, COVID-19 has been both a disruptor and leveller across silos. A pandemic does not discriminate. Moreover it has exposed, globally and nationally, fault-lines in health systems and leadership.
Integrating care and interoperability are often quoted terms from healthcare professionals but in thinking about the challenge from the patient point of view, given we cannot easily enact scalable, sustainable strategies such as those proposed by Michael Porter and Elizbeth Olmsted Teisberg in Redefining Health Care, should we now ask if it is time to consider a different solution?
Perhaps one of enabling patients to navigate the complexity of the system? After all, whose health is it anyway? Do we really understand the impact of a diagnosis, if we don’t have lived experience?
So how can we anticipate and minimise the barriers in healthcare and enhance the enablers to improve the patient experience across the whole of the healthcare journey? The following from a patient, reflecting on their own experience, provides clear insight.
…it literally is your life in their hands. So, you listen and try and take onboard a lot of information that is given your way. Some of which is ambiguous, some of which is contradictory, truly quite an anxiety provoking time in one’s life.”
Patient and systems navigation
So, if the problem in health is that it is a legacy system no longer fit for purpose, how about the radical thought of someone (or something) that can understand the system and make it work for the person that’s trying to use it? A workaround yes, not ideal, but surely a bridge to the future?
We embrace the opportunities that digital health in all its guises can provide, though the technology is really not the issue — it is about culture and getting the ‘system’ to use that technology effectively. And this is where navigators can assist.
Many elderly or digitally challenged individuals – both health professionals and patients — may have difficulty accessing technology but can be assisted by a ‘navigator’.
Harold Freeman is widely regarded as the father of patient navigation.
In Harlem, New York in 1990, Professor Freeman saw that women of certain demographic and socioeconomic groups were having worse health outcomes than other women in being diagnosed and treated for breast cancer.
He sought to understand the enablers and barriers of care and set up an approach to address this.
By providing a person, who understands the system and what the outcome should be, the patient is provided a resource in the form of a patient navigator to help negotiate the healthcare journey.
From the introduction of the first patient navigator program in cancer care in 1990, public funding was secured through the National Cancer Institute to establish the Patient Navigation Research Program and specific legislation followed in the form of the Patient Navigator and Chronic Diseases Prevention Act.
Whilst the US has led the way, through the public health and private insurance systems, many countries are now looking at how to effectively use system navigation to improve health and care journeys.
But whilst this is developing here, there is no centralised approach. This is evidenced by the increasing number of roles across the sectors of health, not-for-profit and lay communities for cancer care navigators, mental health navigators, aged care navigators and many others.
How do we build on the experience both locally and globally of developing exemplars? In the development of Navigator training programs it should be acknowledged that 60 percent of those over 65 in Australia have more than one chronic disease and therefore generalist navigators as well as specific roles should be developed as part of a comprehensive model.
Primary mixed-methods research conducted in Australia in 2020 examined the current state of healthcare navigation in Australia. Patients were interviewed to understand their respective journeys across primary, secondary and tertiary care.
In addition, primary health network surveys and interviews in primary and hospital care were conducted. Whilst thematic analysis gave clear insights into the structural, informational and emotional considerations of the healthcare journey it was the experience of the individual interactions and enablers and barriers that were of key importance for the patient.
Given the role of the navigator is to remove barriers and enhance the healthcare experience this provides an alternative and timely opportunity to enable and empower patient care, as well as system change from the demand side versus the supply side.
A major role for Navigators is connecting patients with their health providers as well as playing a role in identifying some of the social dimensions of their health problems and with regard to the latter perhaps broadening a scope of role of social prescribing which is now gaining traction in Australia.
The health and social welfare workforce is around 15 percent of the Australian workforce and needs to provide the right person with the right skills in the right place at the right time and at the right cost.
This is a great opportunity for Governments to act to provide the fit for purpose workforce we need to deliver the health outcomes all Australians deserve.
“A journey of a thousand miles begins with a single step” (Lao Tzu).
Siân Slade is a UK-trained pharmacist, MPH, MBA, GAICD qualified. With formative career years in HIV/AIDS in the 1990s, she has spent the past 20 years in design, development and delivery of regional and global capability platforms, through leadership roles based in the UK, France, the USA and Australia in global pharma (research, development, commercialisation). Slade’s focus is on patient empowerment through patient-centred models of care as part of health system strengthening and health reform. Specific passions are patient navigation, social prescribing and care connectivity. She is Deputy Chair of the Precision Health Community of Practice at the Australasian Institute of Digital Health and a Board Director at LiverWELL.
Peter Brooks AM MD FRACP FAFPHM is an Honorary Professor in the Schools of Medicine and of Global and Population Health Melbourne University. He is also Research Lead at Northern Hospital Epping Victoria. Trained as a Rheumatologist, he has held Professorial posts at the Universities of Sydney and UNSW and was Exec Dean of Health Sciences at the University of Queensland He established and was Director of the Australian Health Workforce Institute, University of Melbourne from 2008 – 2013. He has interests in new models of health care delivery, health funding, patient engagement in health decision making and digital health.