The Healthcare Journey
By Elizabeth Buie | 07/04/2019
With contributions from Lou Shackleton and Steve O'Connor.
What prompts people to initiate a journey through the healthcare landscape? What information do they use to help them navigate it? How do they make decisions? At what points, and in what ways, might technology facilitate their journey and enhance their ability to care for their health?
To explore these questions, we needed first to describe a user journey that could serve as our model. For this purpose, we have drawn on two models of how people access healthcare services. Taber, Levya, & Peroskie (2015) describe a process that enables a focus on points at which people avoid accessing healthcare services, and on their reasons for doing so. Weller et al. (2012) and Walter, Webster, Scott, & Emery (2011) discuss and expand on the “Andersen Model” of diagnostic delays along the road to beginning cancer treatment (Andersen, Caccioppo, & Roberts, 1995). Our journey concept takes a broader perspective on the process, adding to the aforementioned models by focusing on the user experience and by considering what stages might occur after treatment commences.
This article is part of a series that uses this healthcare journey to help us understand similarities and differences across individual user experiences. We highlight what gets in the way of people’s accessing and using information, technology and services to improve their health, and we explore some ideas for enhancing their access and use of those resources during the various stages and key time intervals of the journey.
Stages of the Healthcare Journey
The following list summarises the key stages of the journey and gives some examples of activities that might occur during each one.
Prevent and detect — Take advantage of preventive care and early-detection tests.
- Prevent: low-dose aspirin, exercise, healthy diet, flu jab, yoga practice
- Detect: blood-pressure check, cholesterol screening, HIV test, routine cancer screening (breast, prostate, cervical, bowel…)
This stage ends when one or more symptoms or problems are noticed.
Notice and appraise symptoms — Observe a health-related change and investigate its meaning and importance.
- Notice/observe: Experience back pain after playing tennis, find a breast lump whilst showering, feel knee pain on walking, experience chest pain and shortness of breath, feel very down for a long time, receive abnormal test/screening results, notice an increase in the frequency and severity of headaches
- Appraise/investigate: Seek medical information from trusted online sources (NHS, patient.co.uk, Mind, Cancer Research UK…), compare symptoms experienced with descriptions provided, talk with friends/family who have had similar symptoms, ring 111
This stage ends with the person deciding whether or not healthcare services may be needed.
Seek care — Identify an appropriate healthcare provider and book an appointment
- Identify: Determine whether the condition requires medical care or whether it can be treated by an alternative provider or with over-the-counter medications
- Book: Ring the surgery, log into GP’s website, visit pharmacy, email massage therapist, call 999
This stage ends when the person has booked an appointment or the ambulance has arrived.
Receive care — Visit one or more healthcare providers for diagnosis and treatment of the condition and/or its symptoms.
- Visit: See provider, receive diagnosis or order for tests or referral to specialist, determine treatment or further tests/consultations needed, get further tests, see specialist
- Receive treatment: Receive injection while in the surgery/clinic; receive and collect prescription and take tablets for five days; undergo total hip replacement surgery followed by wound care and physiotherapy, undergo lumpectomy followed by chemotherapy and radiation
This stage ends when the treatment is complete or the person can accomplish ongoing treatment on their own.
Monitor and manage condition — Keep an eye out for returning symptoms, manage chronic conditions.
- Monitor: Check blood sugar levels; check blood pressure every few months
- Manage: Take insulin as directed by the doctor; take blood-pressure tablet every morning; engage in daily mindfulness meditation
This stage ends when symptoms return or the person is deemed to require no further monitoring. Discontinuation of monitoring may occur if the person is considered cured or if the condition is determined to be incurable and the person shifts to palliative care.
Although this stage may look much like the Prevent and Detect stage that began the journey, it monitors and manages a condition that has already been diagnosed.
This healthcare journey involves several key time intervals that can influence healthcare outcomes:
- Appraisal time: The time it takes a person to appraise their symptoms after having noticed them.
- Care-seeking time: The time it takes a person to seek care after having decided that their symptoms require healthcare attention.
- Start-of-treatment time: The time it takes to begin receiving appropriate treatment once the treatment has been determined. This can range from a few minutes (waiting for an injection while at the surgery), to hours (time to collect a prescription at a pharmacy), to days and weeks, to months and years (time to consult one or more specialists).
The Journey Continues...
The model of a healthcare journey that we have described above recognises that people can end a journey at any time — during any stage or between stages — or can return to an earlier stage. It is our attempt to articulate typical steps, which we intend to explore in more detail with patients, carers and HCPs. Later in this series of articles, we look at what the research literature tells us about why this happens.