Olivia Anstis is a registered psychologist with 20 years’ experience in the health service. She has worked clinically with patients and whānau in oncology, bariatric and general surgery settings. More recently she worked as a clinical strategist, researching and designing eHealth interventions for people with long-term conditions, and mapping the experience of patients and carers within the health system. She is passionate about understanding patient perceptions, beliefs and experiences and how these ultimately influence healthcare outcomes. Olivia now works as an improvement advisor for strategic projects at Ko Awatea, focusing on World Health CLIMB – Ko Awatea’s latest innovation accelerating leadership in health and care. Olivia holds a master’s degree in health psychology and is currently working towards a Master of Health Leadership at the University of Auckland.
Dr Jodie Main is a registered health psychologist. She was awarded a PhD from the University of Auckland in 2008 for her research exploring beliefs and perceptions of people with asthma. Jodie maintains a private health psychologist clinical practice and works as a health psychology specialist for Atlantis Healthcare, where her role involves research and consultancy for a range of public and private organisations, including recent work on the patient journey for people with upper GI cancer at Waitemata District Health Board. Jodie has a particular interest in facilitating shared decision-making in healthcare. She believes that qualitative research exploring patient experiences in healthcare are a crucial first step to improving services.
Patient journey maps collate the experience and interactions of patients with the healthcare system and represent them in a visual way. Recently Atlantis Healthcare has developed a unique approach in the construction and depiction of these patient journeys, based on a biopsychosocial model of health. They identify key points in the patient journey where interactions are suboptimal or there are gaps in what the patient needs. Using these insights, patient journey maps inform the co-design of an optimal patient journey which addresses problem areas to drive improved outcomes.
The development of patient journey maps covers three stages: uncovering the current patient journey, co-designing the optimal journey, and digitisation of the journey map so people can access and use the information.
The benefits of patient journey mapping
Patient journey mapping has benefits for patients, healthcare professionals and health service managers.
For patients, insights from patient journey mapping can improve experiences of healthcare by identifying and improving those aspects of care which are most important and by improving health literacy. It also helps patients to understand the course their condition and its treatment might take, and to gain comfort from knowing others share similar experiences.
For healthcare professionals, patient journey mapping increases understanding of the patient’s perspective. It is particularly valuable to build a holistic picture of the patient experience for clinicians who work with patients likely to go through a number of different services. Patient journey mapping also helps clinicians to understand patients’ health beliefs and behaviours.
At a managerial level, insights from patient journey mapping can inform decisions about where to focus funds, identify areas of inefficiency and inform solutions to improve key metrics.
Building a patient journey map
Talking to clinicians as a first step helps to build a map of the disease trajectory from pre-diagnosis to end-stage disease, which serves as the ‘bones’ to build experience around. Patient journey maps then require input from multiple stakeholders, including patients, carers, ward staff, general practitioners, community services and specialists.
Patient focus groups are an effective way to collect experiences, as well as offering patients with less common conditions an opportunity to meet others with the same disease. Culture-specific focus groups recognise different ways of thinking about health.
Practical application – case examples
Ministry of Health: Type 2 diabetes
The Ministry of Health used patient journey mapping to understand the experiences of people with type 2 diabetes. On behalf of the Ministry of Health, Atlantis Healthcare used a biopsychosocial model to encompass the biological course of the condition and its psychological and social impacts. They were interested in patients’ experiences through all stages of the condition, reasons for engagement or disengagement with healthcare services, factors supporting psychological wellbeing, patient-clinician relationships, support resources and key cultural differences.
The work showed that people’s psychological reaction to diagnosis significantly influenced the course of their condition. Patients who initially reacted with defensive denial developed end-stage renal disease more often than those who accepted their condition.
Whatever the initial reaction, health literacy was central to the patient journey. Diabetes is complex and difficult to understand, but patients often felt too shy or embarrassed to admit they didn’t understand what healthcare professionals told them. English as a foreign language was also a barrier to understanding for some patients.
The patient journey mapping also revealed that adherence to medication was a problem. Patients tend to self-regulate their dose according to how they felt, to deal with side-effects, or according to their beliefs about the medication. There was also a fear of moving on to insulin as a ‘last resort’ medication, particularly among the Pacific community.
Other themes that emerged from the work were that Māori and Pacific people hold unique beliefs about medicine and food that can influence the self-management of diabetes, that internal motivation based on what matters to the individual patient is most effective to maintain self-management, that support from health professionals and family members is valuable to patients, and that patients struggle with poorly coordinated care that forces them to fit their life around the healthcare system.
Using these themes, Atlantis Healthcare developed a patient journey map using imagery drawn from patient stories and analogies. The map shows Kingi the Kiwi (the patient) being chased by Sly the Stoat (diabetes) as he walks through the forest. It was used to inform the 2015 Diabetes Strategy, as a discussion aid between healthcare professionals and patients, and in a trial for medication adherence.
Waitemata District Health Board: Upper GI cancer
Patient journey mapping can also be used to evaluate and improve specific services. Waitemata District Health Board (WDHB) used it to improve the experience of patients undergoing treatment for upper GI cancer.
On behalf of WDHB, Atlantis Healthcare used semi-structured interviews and focus groups to understand the experiences of patients, carers and healthcare professionals to gain a holistic picture of the patient journey.
Atlantis Healthcare then built a visual journey map representing the key themes from the experiences people reported.
One key theme that emerged was the need for patients to have a key contact person and care coordinator for support and problem-solving. Patients who had experienced this role, often played by a nurse specialist, found it invaluable for negotiating cancer-related services and ‘making things happen’. As a result, they reported reduced anxiety and feeling recognised as a person instead of a disease.
Another theme was the need for support on discharge. Both patients and healthcare professionals described the possibility of patients feeling abandoned on discharge. This illustrates the importance of looking at the whole patient journey to find the points where support is lacking.
Support needs were also acute at first diagnosis, when stress and anxiety are often highest but the patient has not yet been connected with support services, and when patients were transferred from intensive care to the busy ward environment. This was a key point where patients often felt lost and unsure who to approach for help.
The map also highlighted communication problems between the hospital and general practitioners. Neither reliably received the information they needed from the other, particularly concerning information relating to a patient’s psychosocial wellbeing.
WDHB re-engaged with participants to redesign the service. They introduced a care coordinator on the ward and helped patients get to know a dedicated booking clerk. They have also begun giving patients information to help them identify staff members by their uniforms.
The final stage will be to add value by putting the map into a digital format which users can tap into to access information.
Atlantis Healthcare is an international organisation which leverages health psychology to develop and deliver uniquely personalised healthcare solutions that drive sustained improvement in patient outcomes through supporting self-management and treatment adherence across chronic diseases.
This article is based on a presentation given by the authors at Patient Experience Grand Round, 23 February 2017.