Mapping the clinical and emotional journey to better understand lived experience

Written by By Chris Hodgson, Neil Rees, Sumira Riaz and Karen Petticrew on Monday 16th March 2020

When a person enters the healthcare system (for any reason, at any time) they are automatically joining a care pathway. Irrespective of the disease area, the purpose of the care pathway is to document best practice, with the aim of ensuring that people affected by the disease in question are receiving the best standard of care available at each stage.

While we can all agree that trying to standardise care for everyone is a positive step towards ensuring patient management, a standard pathway does not always reflect the variety involved in the real life ‘lived ‘patient experience. This difference in patient experience is even more pronounced amongst those living with a Rare Disease – people affected by rare diseases can have them from birth and their symptoms can vary significantly. Consequently, there is no single nor consistent experience, and those living with Rare Disease can have an ill-defined yet complex pathway: at any given time there can be multiple healthcare professionals involved in their care, as well as many, varied clinical interventions required at different stages, all of which has an emotional impact on the person diagnosed as well as their family, friends and caregivers.

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.

Where does the Patient Journey Map start?

A starting point to build the emotional journey is to collate all available information. Immersing yourself in existing data, such as previous market research or exploring the disease area on social media platforms supports an initial data immersion exercise that can feed into a bespoke qualitative research approach. In Rare Disease especially, the voice of advocacy can be more prevalent with patients, family members and caregivers as well as healthcare professionals because they often have to become experts on the topic. Using tailored methodologies and projective techniques to elicit deep-rooted feelings throughout the journey will help us further understand the lived experience of the patient and specifically the psychological impact of clinical milestones. Furthermore, it can be extended to include the emotional response of family members and caregivers at each milestone, thereby including a further layer of insight beyond that of the patient and healthcare professional.

In addition to mapping clinical patient pathways, the use of HES data can support the development of innovative solutions and service improvement, track outcomes and provide real world evidence. These data sets are used for the purposes of providing supporting information for business cases, epidemiological research, burden of disease analysis, health economic research, predictive analytical modelling, NICE submissions as well as quality and outcome analyses. The aim is to improve patient care, enhance access to services and encourage innovative solutions, which is supported through a true understanding of the patient’s emotional well being. The data immersion and bespoke market research used to better understand the psychological journey can aid identification of unmet needs, leverage key information points and assist in facilitating tactical solutions around services to improve referral pathways (that are often convoluted in Rare Disease), patient care and support education for healthcare professionals.

Overlaying the clinical journey with the emotional journey is the unique offering of this technique – by understanding unmet needs, drivers and barriers for change along the journey, it is possible for teams to develop interventions tailored to patient, healthcare professional or stakeholders’ individual needs, helping the patient experience and, hopefully, leading to improved patient outcomes.



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