The following article illustrates how inequities arise in healthcare, one disease at a time. It highlights insights from a program we are currently working on with Roche that aims to reduce healthcare inequities in New Zealand particularly influenced by liver cancer. Human-Centered Design research allows an understanding into the dynamics of complex problems driven by motivational, cultural, and social behaviors. We thank Roche and the study participants to allow us to share our approach which we believe others will find transferable to their own subject matters.

Healthcare’s Responsibility to Society 

Inequality is not the same as inequity. Equality gives everyone the same resources. Equity acknowledges that individuals have different circumstances and allocates resources uniquely with the aim of achieving equal outcomes. Healthcare achieves equity by not only making care available and affordable, but also accessible, acceptable as an option, and appropriate to people’s varying situations.1 

This is, to use a phrase coined by design theorists Rittel and Webber, a ‘wicked problem2; something difficult or impossible to solve because it has a myriad of causes and effects that keep changing. For example, illness creates financial burden, which may push people to live further from urban hubs and accessible health care, it leads to less money for quality food and education, which leads to poorer health and lower paying jobs. And so, the cycle continues. But the absence of a single solution does not make it insolvable. Nor does it remove our responsibility to improve the situation. Even though a single intervention cannot eradicate inequity altogether, each player in the healthcare scene must be aware and intentional about the broader picture and their respective influence.

...if you're looking at policy for to lessen inequity, you need to prioritise those who are currently doing worse, not be equal”. ~ Hepatologist 

Liver Disease and Cancer in a Nutshell

The liver can get inflamed, this is known as hepatitis. Hepatitis can be caused by viruses like hepatitis B and C which are spread through blood, semen, and other body fluids. Excessive alcohol and a buildup of fat in the liver can also cause inflammation. When this becomes chronic, the liver tissue forms scarring (Fibrosis) due to the continual attempts to repair itself. This decreases liver function and aggravates the condition. Cirrhosis is when there is severe scarring and permanent damage which eventually can turn cancerous (Figure 1). Hepatocellular carcinoma (HCC) is the main type of liver cancer. Because of the few symptoms in early stages of liver disease and cancer, many are diagnosed late. At late stage, the prognosis is dismal and suitable treatments are limited and expensive.

Figure 1: The stages of liver disease to liver cancer

Liver Cancer Mortality Disparities in New Zealand

Liver cancer is a rapidly increasing cause of cancer mortality in New Zealand. It is one of the top 5 causes for cancer related deaths for Māori.3 There is a large disparity – Māori have a 31% poorer survival rate than non-Māori once diagnosed.4 Through interviews, we were able to understand that despite a well-functioning multi-disciplinary team who were able to achieve clear diagnoses, patients were getting lost in the follow-up. Monitoring progression of liver disease by surveilling for early signs of cancer is important. It allows early action and provides the opportunity to address with a wider range of treatments. Equally, not every case of liver disease turns cancerous, so monitoring can also avoid unnecessary intervention. It became clear from interviews that surveillance was a major issue which was negating a lot of the downstream efforts for HCC treatments (Figure 2 – HCC Surveillance).

Figure 2: Highs and lows throughout the liver care journey in New Zealand

Earlier in the journey (Figure 2 – Liver Disease Treatment), there is good opportunity to reverse damage or at least prevent the condition worsening. For example, some types of viral hepatitis can be cured or well managed with heavily subsidized medication. Unfortunately, this is not rendering optimal success due to poor compliance. We heard a story of two sisters seeing the same nurse for hepatitis without each other knowing; the secrecy was driven out of shame and stigma. With family being central to Māori health values and decision-making, liver conditions are especially difficult to navigate.

This is a classic example of how we can make headway in bridging the health care gap through available treatments and seemingly equal services, but still see inequity in the outcomes. Other suitable support such as patient education especially around diet and exercise to combat fatty liver was also insufficient. These factors are made more difficult by nuanced cultural milieus including social gathering around food, health beliefs, well-being values, communication style, and language.

Going back one more step (Figure 2 – Liver Disease Screening) Māori are less likely to be picked up for liver disease due to a historical distrust in the healthcare system which leads to lack of engagement. There was a mentioned lack of Māori GPs and a tendency to only engage with healthcare out of urgent necessity landing them straight in the ER.

At the end of this journey (Figure 2 – HCC Treatment) is the treatment of liver cancer. The key issue was the cost of targeted therapy which was needed since so many cases were picked up late where surgery or chemotherapy were no longer suitable. Tackling the root causes for long-term strategies is important for sustainable action, but this also needs to be addressed for the immediate situation.

There are multiple actions that came out of this study across the full spectrum. For the purpose of showing how inequities can arise, we will do a deep dive into surveillance.

The Ultrasound Bottleneck in New Zealand 

The current method of surveillance for early detection of HCC is ultrasound. But to get an ultrasound, one must travel to one of the few main hospitals that have suitable radiology departments. It became clear from interviews that this was the most significant pain point for healthcare practitioners and patients alike.

Radiology departments deal with much more than just liver imaging and are commonly overstretched. Due to high demands on the department, scheduling is of utmost importance. This leads to a necessarily strict appointment policy. However, the design of the ‘did not attend’ policy has not considered the contextual circumstances of the populations it serves and is leading to certain demographics falling out of the system. On top of this, we heard story after story about the logistical nightmare of trying to get to an ultrasound appointment.

The appointment scheduling is as such: once referred to ultrasound by your GP, you have a window of time to make and attend an appointment. Slots and times are limited so if you can’t find an appointment that works, you’ll need to go back to your GP (and pay) so they can give you another referral. If you do make it past this stage, you’ll need to confirm your appointment the day before, if not, you lose your slot.

“Just last week, a man went for the appointment, because he actually listened to the voicemail stayed got an appointment, because he didn't call back and say he would be going. When he turned up. They said, I'm really sorry, off you go, we've given you slot to somebody else, because you didn't confirm... the time slots in radiology are under pressure quite clearly. So that that has knock on effects for those least able to navigate the health system... those people that we need to be helping a bit more”. ~ Clinical Nurse Specialist 

Due to the geographical landscape of the country, those living outside of Auckland or a main center need to travel hours to get to appointments. Patients faced expensive fuel, heavy traffic, time off work, high parking fees, difficulty finding parking spaces, and costs for food away from home.

“I've had patients who have, you know, driven around for half an hour trying to find a park... sometimes the line goes all the way down the street...and they’re just be so stressed and over it that they ring me and go ‘we’re going home’.” ~ Clinical Nurse Specialist 

While this isn’t always the sequence of events for everyone, the theme was clear – a “postcode lottery of care” as one interviewee described it. People who lived further from a radiology department would end up with poorer ability to get a speedy diagnosis (as well as access to treatments by specialists located in Auckland).

“The appointment may well be suitable to the radiology department but may not be suitable to John who is a farmer who works long hours who isn't at home to receive the phone call message to say that the ultrasound scan is on Thursday at 11 o'clock. So, then he doesn't turn up, looks like he's missed an appointment, when in actual fact, he was out working on the farm and his reception is no good when he's out on the land. Now that's an actual recent example.”  ~ Clinical Nurse Specialist 

There are a few ways in which the current system could disproportionately impact Māori.  

  • Firstly, getting a referral to begin with may be less likely. In addition to the low engagement with the healthcare system mentioned earlier, going back to get a new referral would involve paying to see a GP yet again. GPs are not free, albeit subsidized for some, getting food on the table was commonly mentioned as a higher priority for the groups this relates to.
  • Secondly, losing an appointment slot because of failure to confirm could be a common scenario due to lack of phone credit or reception resulting from increased deprivation seen in this demographic.
  • Thirdly, the difficulty in attending ultrasound appointments may be greater. As family is a core pillar in Māori health, individuals often take family members to doctor appointments for shared decision-making. This can make the already challenging logistics even more burdensome. Difficulties organizing and paying for transport, car sharing, and inflexibility of job schedules could be multiplied by the additional number of people to coordinate.

Of course, these struggles do not only impact Māori, they are also felt by others that live outside urban centers, the less tech savvy, elderly, and other high-risk groups including Pacifica and Southeast Asians. Based on prevalence and risk, other sub-cultures need to be investigated to tailor interventions that truly engage and change outcomes.   

Addressing the Postcode Lottery of Care to Reduce Inequity

It is natural to eagerly conjure up solutions such as lobbying for appointment policy changes, transportation aid, and subsidies. But taking a step back and refocusing on the goal of early diagnosis is important. Currently, ultrasound is the primary method for liver cancer diagnosis. However, sticking with this method given the resource constraints means certain populations are failing to be surveilled at all. Framing the design challenge is important – the goal wasn’t about making it easier to get to an ultrasound, it was about making it easier to get a diagnosis.

One possible solution is to use novel HCC biomarkers and risk algorithms as diagnostic tools which can help detect high-risk individuals through a simple blood test and risk score. These tests could be easily carried out in local clinics and followed by ultrasound for higher resolution only if necessary. This would avoid people having to go on the lengthy endeavor for an ultrasound unless the benefit was justified. Lessening the numbers would allow budget to be reallocated to improving that journey for the reduced number who need it, until alternative systemic solutions could be implemented. The postcode lottery of care was a reoccurring theme throughout many regions in APAC for which we plan to expand on in future research and writings.

Next on the agenda for this project will look at how to improve engagement for a new surveillance program using such a biomarker and risk score diagnostic method. We will investigate the specific contributors that hinder liver cancer surveillance such as stigma, cultural values, family decision-making, and health beliefs. With these insights, we aim to co-design with Māori, for Māori, a program that resonates and appreciates holistic experience and local context.

Tackling Wicked Problems Through a Human-Centric Approach

Inequity in healthcare is not just about decreasing mortality or clinical outcomes. Human-centricity cares about what it means to feel well, including how health facilitates a sense of social belonging. In this case, we are careful to avoid creating situations that exacerbate stigma through inappropriate and generic awareness campaigns. We are challenging the common desire to ‘normalize’ as an approach, by understanding what repercussions this may have on the ability to respect values and preserve culture. We need to understand what messages should be communicated, and who the ‘messengers’ should be, to avoid further distrust in the healthcare system.

With all this said, it can feel like a daunting task that creates fear of taking any action at all. Yes, designing for wicked problems involve being conscious of system dynamics, but it does not require perfection. It is about being aware that systems inevitably change, and once you intervene, it will change again.5 Therefore, feedback loops are needed so that we can adapt. Tackling inequity is a continuous effort of iteration. Our responsibility is to dutifully consider our knowns and unknowns, mitigate what we can, and ground ourselves in human-centricity.

Conclusion

The postcode in some ways represents much more than geographical location, it’s an allegory of difference. Inequity arises because people try to access healthcare services but have different starting points, are trying to operate in different contexts, and are surrounded by different forms of support. To deliver equal outcomes, we need to uniquely understand their lived and human experience and support disproportionately. Achieving equity in healthcare means appreciating people have different values and subjective definitions of quality of life, designing for flexibility is key and qualitative human-centric research is priceless.

Healthcare companies have the opportunity to think innovatively about the problems we face. The argument with postcode lotteries of care has always been that it is more economical to bring the people to the specialists that tend to cluster around major hubs, hence Centers of Excellence. But with technology, advances in diagnostics, and new ways to collaborate, we needed to pause, throw away blanket mindsets, and consider how this could address problems in new ways.

The road to equity is not a one-time solution, but a myriad of interventions; each product, medicine, and healthcare service plays a role. We can either improve the situation or make it worse. We need to be intentional and realize that we do influence the system, in perhaps small but not insignificant ways. Helping one person, helps a family, which helps a generation stop the viscous cycle of inequity; we need to remember the people behind the numbers.

Jun Ng | Senior Design Researcher
Jun is a specialist in Human-Centered Design at Veranex. She has been involved in the ethnographic research of this multi-region Asia-Pacific liver cancer study with Roche, of which New Zealand was involved.

References

  1. Government P| NZ. Access equity: What it means for Pharmac [Internet]. Pharmac | New Zealand Government. [cited 2023 Jan 11]. Available from: https://pharmac.govt.nz/about/access-equity/access-equity-what-does-it-mean-for-pharmac/
  2. Rittel HWJ, Webber MM. Dilemmas in a general theory of planning. Policy Sci. 1973 Jun 1;4(2):155–69.
  3. Te Aho o Te Kahu. He Pūrongo Mate Pukupuku o Aotearoa 2020 The State of Cancer in New Zealand 2020 [Internet]. Te Aho o Te Kahu – The State of Cancer in New Zealand 2020. [cited 2023 Jan 11]. Available from: https://teaho.govt.nz/
  4. Gurney J, Stanley J, McLeod M, Koea J, Jackson C, Sarfati D. Disparities in Cancer-Specific Survival Between Māori and Non-Māori New Zealanders, 2007-2016. JCO Glob Oncol. 2020 Jun 8;6:GO.20.00028.
  5. Meadows DH. Thinking in Systems: A Primer. Chelsea Green Publishing; 2008. 242 p.

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