Understanding the patient experience
The value of developing a Patient Journey Map in this situation cannot be underestimated in adding clarity for both patient and healthcare provider. There are further benefits in identifying areas that require extra support, such as information for healthcare professionals, patients, family members and/or caregivers. However, when defining the scope, content and delivery of a patient journey map there can be inconsistencies in… scope, content and delivery. For some stakeholders, the clinical parameters of the patient experience are key, while others seek to define the psychological experience and emotional journey of patients and caregivers from diagnosis onwards.
Although deciding to take one approach over another is dependent on the needs of stakeholders and organisational requirements: considering rational and emotional parameters enables the creation of a patient journey map that will fuse both clinical and psychological experiences.
As a starting point, understanding how patients proceed through the healthcare delivery system, using validated real-world data is essential. A clinical pathway can be produced by analysing Hospital Episode Statistics (HES) data: a records-based system that covers all NHS Trusts in England. All data collected is pseudonymised and follows patients’ clinical touch points during their time under the care of a physician based in the NHS.
The data collected in HES includes, but is not limited to:
- Patient details – age, sex, ethnicity and location
- Clinical details – diagnoses, investigations/tests, operative procedures, consultant and speciality
- Administrative details – NHS Trust, GP, admission/discharge date and method and referrer
Mapping patients along the entirety of their disease pathway, from initial referral through diagnostics to first definitive treatment, enables a greater understanding of the efficiency of care delivery and where opportunities exist for improvement or, in the case of Rare Disease management, any points that require further clarity or additional interventions. There are various aspects of the patient journey elicited from HES data that can shape any subsequent exploration into the psychological experience, such as:
- The approximate time between the first and last step? From first appointment to diagnosis to first treatment initiation.
- Where are the longest delays? This can be especially pertinent in Rare Disease management.
- The approximate time between each step?
- How many steps are there? Identifying aspects such as time to diagnosis and time to initiation of treatment can shape how to develop a picture of the patients’ psychological journey
The clinical pathway can also highlight who the healthcare professionals involved in the journey are (which can be as many as 7 different specialities in an accurate diagnosis of Rare Disease due to varying symptomology). Gathering their perceptions along with those of the patients, carers and patient advocacy groups can help to better identify and define the variety of emotions experienced at each touch point, thereby providing a deeper understanding of the psychological dimensions.