Young Woman Discussing Problems With Counselor
The 1970s stand out for many reasons: lurid wallpaper, funny hair and flares. It was also the decade of colour TV and the beginning of patients being invited to speak up about their experiences in hospital. While consumer rights groups started emerging in the 1950s, it was during the 70s that momentum grew[i].
We can be encouraged then, that consumer participation in healthcare has exercised the best minds for decades. Health systems are being shaped by the input of consumer advocates and the care patients receive is being enhanced. But just like with the fashion of the 70s, we can always improve.
The traditional avenue for the consumer’s voice is through advocacy groups or community representation in hospitals and by patient-centred care strategies. All these avenues rely on the health system to open the door to patients and families, inviting them to be part of decision-making, redefining systems and establishing support strategies around which patient care can flourish.
For consumer voices to be legitimate, they don’t have to only speak in the forums offered by health jurisdictions. To evolve, the healthcare system has a responsibility to seek out the voices of people who have intimate experience of health systems and who provide insights that a doctor, nurse or policy maker can’t.
The patient is the only stakeholder who experiences the whole journey.
Extending the reach of research on patient involvement beyond the institutions of hospitals, medical practices and allied health professional settings, and into everyday lives of patients, families and carers is essential to create a robust and sustainable system. We know hospitals, aged care facilities and community settings alone cannot carry the burden. Our health system is facing many complex challenges including a rapidly aging population, increasing rates of chronic illness such as type 1 diabetes, escalating cases of life threatening conditions such as melanoma, rising costs and serious waste. In order to create a system that will be sustainable, consumers have a major part to play. Patients, carers and consumer advocates are living the healthcare system. They are being treated, visiting hospitals, caring for patients, volunteering, negotiating policy, farewelling loved ones and paying the bills. The patient is the only stakeholder who experiences the whole journey.
Learning how patients with lifelong conditions are affected in ways other than the physical can lead to improved wellbeing for the patient. As argued by Lamprell et al[ii], “There are gaps in our comprehension of patients’ subjective experiences as they engage with and transit through the healthcare environments implicated in their treatment trajectories. Patients’ stories, unlike patient experience data gathered in questionnaires and surveys, express the deeply personal, narrative nature of the journeys that patients take …”.
Take one example. Rates of melanoma are rising in Western countries and people diagnosed are between six and nine times more likely to develop a subsequent melanoma compared with the general population, placing an enormous burden on patients and the services they use (Lamprell et al[iii]). It is an aggressive and unpredictable cancer. Conventional treatments of surgery and radiotherapy can result in permanent disfigurement and disability and treatment can lead to ongoing healthcare needs, difficulties with employment and relationships.
First class information is available about the clinical treatment of melanoma for patients, but the recent study by Lamprell et al explored the journey in the patient’s own words and uncovered a gaping hole. By studying patients’ personal experiences from diagnosis to treatment and recovery via their written stories on online forums and blogs, it became clear that patients with melanoma need specially structured support that recognises that their cancer is aggressive and recalcitrant; that the journey is uncertain and lonely; and that there is never an all-clear.
This intimate knowledge can only come by listening. Sharing. Working together.
Rethinking support systems outside the obvious of surgery and pathology could lead to melanoma patients and others with life threatening conditions seeking help sooner and therefore experiencing improved outcomes. Specialised support could also be designed to alleviate the stress on their emotional and social wellbeing.
In another study of ours, parents of critically injured children were invited to tell their stories[iv]. These parents face a long and unpredictable journey during the acute hospitalisation phase of their child’s care. Through interviews, researchers found that parents were frightened, unsure of the decision processes and often consumed with self-blame. Such personal insights are invaluable in achieving deeper understanding of the impact of the health system on consumers.
A new research initiative funded by the National Health and Medical Research Council (NHMRC) called the Standing Collaboration (standingcollaboration.org) has begun asking health professionals and consumers to improve the guidelines that clinicians use for the treatment of people with lower back pain. This condition costs the Australian economy $4.8 billion[v] and yet from the nationwide CareTrack study[vi] we know that many clinicians do not follow clinical practice guideline (CPG) recommendations. This is partly because clinicians (and patients) are time poor and steps are sometimes skipped. We also know that CPGs are not always as up to date or readily accessible as they should be, to be truly effective. The Standing Collaboration asks clinicians and consumers to help improve CPGs. It recognises the real-life experience of consumers and places trust in their views.
By formulating such research initiatives – that invite the voice of patients to be heard on their own terms and in their own environment – we help the consumer cause.
Which brings us back to the 1970s. Dr Bernard Lown was a renowned American cardiologist and educator in the 1970s and a 96-year-old patient in 2018. In a recent article in the New York Times[vii], the physician treating Dr Lown, Dr Rich Joseph, reflected on patient care and what he had learnt from Dr Lown’s book, “The Lost Art of Healing”. Dr Joseph said he was inspired to go to work every day with that book in mind, with, in fact, the perspective of a patient. Clinicians, policy makers and health systems researchers could all take inspiration from this, too.
[i] Mold A. Patient Groups and the Construction of the Patient-Consumer in Britain: An Historical Overview. Journal of Social Policy. 2010;39(4):505-521. doi:10.1017/S0047279410000231.
[ii] Lamprell K, Braithwaite J. Patients as storytellers of healthcare journeys. Medical Humanities. 2016;First published online: 4 April 2016 10.1136/medhum-2016-010885.
[iii] Lamprell K, Braithwaite J. When patients tell their own stories: a meta-narrative story of web-based personalized texts of 214 melanoma patients’ journeys in four countries. Qualitative Health Research. 2017;Published Online First: 25 November 2017.
[iv] Foster K, Young A, Mitchell R, Van C, Curtis K. Experiences and needs of parents of critically injured children during the acute hospital phase: A qualitative investigation. Injury. 2017;48(1):114-20.
[v] Arthritis and Osteoporosis Victoria & Deloitte Access Economics 2013, A problem worth solving: the rising cost of musculoskeletal conditions in Australia: a report, Elsternwick, [Victoria] Arthritis and Osteoporosis Victoria.
[vi] Runciman WB, Hunt TD, Hannaford NA, Hibbert PD, Westbrook JI, Coiera E, et al. CareTrack: Assessing the appropriateness of healthcare delivery in Australia. Med J Aust. 2012;197(2):100-5.
[vii] Joseph, R. Doctors Revolt. New York Times. https://www.nytimes.com/2018/02/24/opinion/sunday/doctors-revolt-bernard-lown.html Published online 24 Feb 2018
