Consumers shifting gears to drive better health care

Here Health Voices presents the diverse perspectives of participants at the Consumers Health Forum’s recent Shifting Gears summit. If you did not attend the CHF Summit: Shifting Gears, presentations are available until March 2022. If you already registered, just log on with your account details. New registrations can also be purchased.

The value of learning from experience was given fresh power at the inaugural Australasian health consumers Shifting Gears summit last month.  The themes of the conference were consumer experience and leadership and these themes spurred the imagination and enthusiasm of the 835 registrants.  The conference was virtual yet created a lively interplay of ideas on a par with a face-to-face event.

A central reason for that lively response I think was shared recognition of the value that consumer experience can play in shaping health care.  Delegates brought an impressive variety and strength of experiences to the many conversations in the six conference streams. Whether it was from the perspective of approach to mental health care, leadership and partnership, digital innovation, research or other focal points, the overall result inspired a refreshed sense of consumer leadership. There is much to learn, including from such community-centred programs as the National Aboriginal Community Controlled Health Organisation success in countering COVID-19.

As the Consumer Health Forum’s first Australasian summit, the Summit proved to be a highly worthwhile experience, affirming our direction and advocacy for the best interests of health care.

The value of patient experience is made the more powerful when articulated by a young person as Harry Iles-Mann does in his description of the health system’s inadequate provision for the transition from childhood to adult care.  He likens the experience of a young patient with chronic condition making the life transition to jumping the gap with concrete boots on. He urges that as we approach reforming models of care for adults we must recognise that as it stands the very first hurdle to entry is set unreasonably high for most.

David Gilbert, who holds a distinctive position as Patient Director at an English health facility, brings insight into how the pandemic there has eroded public and patient engagement yet also opened fresh paths for patient leadership. These include developing roles for a radically different approach on mental health with lived experience practitioners leading the way, the recruitment of a “lived experience advisor” panel to a national statutory body and patient leadership embedded across hospital specialties.

New Zealander Chris Walsh made the point that consumer leadership would benefit from active high-level engagement by providers and agencies across health who understand the value of effective and well-informed consumer leaders ‘sitting at the table, at the time’. “Consumers are an untapped resource in health. Let’s see if we can get this tap turned on so the trickle turns into a torrent… commentators reflect about future health care being ‘unaffordable’ as it stands. It’s time to change the narrative and find out what really matters to those at the centre of care and treatment.”

Ever the innovator, Jeffrey Braithwaite asks us to imagine the unlikely scene where you go to the doctor because you are feeling well and would like to keep it that way. We would be showing an understanding of our own health and prioritising wellness. We are recognising the key ingredients of diet, exercise, continuity of care and prevention that will decrease the likelihood of experiencing severe or chronic ill-health. “This emerging era of consumers embracing wellness with health practitioners in support, and a health system that is guided by research evidence, is essential to a sustainable health system.

What’s going to play a central role in helping achieve better outcomes will be digital health.  As Amanda Cattermole writes, better patient healthcare and health outcomes are possible when you have a health infrastructure that can be safely accessed, easily used and responsibly shared.  The Australian Digital Health Agency’s strategy has established the foundations for a sustainable health system that constantly improves and outcomes will be delivered to all Australians.

Belinda MacLeod-Smith reports that with the onset of COVID-19, many places immediately ceased face-to-face meetings and volunteer programs…”and for a hot minute it looked like GAME OVER for consumer engagement in public health”.  But in fact, a State-wide Clinical Leadership group, including Belinda as health consumer leader, was established to focus on COVID response and planning.  That would ensure the voices of lived experience were heard, a critical step for engagement-capable organisations.

What are engagement-capable environments? Canadian Carol Fancott explains they are those that have embedded the values of patient-centred and patient-partnered care as the philosophy that underlies the priorities of the organisation. These have infrastructures to support active engagement of patients, staff, healthcare teams and leaders to create a culture of engagement. In the words of a wise patient partner: “To my mind, engagement capable environments are those that have a heart.”

Fellow Canadian Jennifer Zelmer reports on widespread take up of virtual care, or telehealth in Australian parlance, and its impact on care.  Now is the time, she says, to decide which of these changes we want to embed and sustain and where we need to adjust or build capacity to more effectively and safely offer virtual care in the future. Consumer voices should inform and influence how we optimize in-person, virtual, and hybrid models of care going forward.

And as Roxxanne MacDonald comments we can teach young people at school about the health system and how to navigate it, to have a say in their own healthcare as partners with their doctors. An entire population of wise consumers whose health literacy is prioritised in school could improve non-urgent attendance at emergencies, medication compliance, and the ability for consumers to work collaboratively with clinicians.

Learning opportunities for women with cancer have shown wonderful results.  Vicki Durston and Jodie Lydeker describe the pioneering SATT program which recruits, trains, appoints and supports people with breast cancer to work as consumer representatives with clinicians, researchers, health service providers and policy makers.​

Michael Greco raises the subject of an influence that is having a profound impact on our health world.  “With the advent of social media, health services are now under greater public scrutiny than in the past. Social media is having an impact on the ways that citizens are engaging with each other and with public services. This is outside anyone’s control and obviously bigger than health policy.  Recognising this significant role that the online space plays in day-to-day life, engagement tools need to evolve to match the way in which citizens prefer to connect.

Consumers are often experts in their own condition, and this should be recognised by healthcare professionals, writes Yvonne Zurynski. Consumer involvement is necessary at all levels of care, from where research is conducted to the design and delivery of care.  But a challenge from a younger delegate at the summit showed the need for a constructive dialogue with youth, and integration of health services into educational institutions so that young people become aware of services and how to access them.

Reflecting on the sense of drive expressed at the Summit, Liz Newton says: “Speaking to my peers who attended other sessions of the summit, this theme was reflected by them too.  It seemed that whatever the topic or area of consumer partnership, consumer leadership, consumer research being discussed, the sense is that leadership, capability building, modelling and commitment are key to success and sustainability when working with consumers.” 

Angela Hehir says another way in which the consumer voice will be central to this initiative is in the telling of personal stories about experiences of participation in research and the benefits that it can bring.

Unlikely as it might sound, there can be a fun side to researching the impact of experience in health care.  Tara Dimopoulos-Bick and Victoria Palmer describe how a board gamecan support research intoExperience-based co-design, the method for healthcare quality improvement where experiences can guide improvements to health care.