The patient’s world is ‘messy’

Over the last ten years, we have seen the status of the patient in healthcare research become more established. Yet often the insights about patients can still be considered ‘nice to have’ rather than a ‘must have’. Their intrinsic value strategically and commercially is often not fully recognised. The real world of the patient is not valued as highly as the clinical world of the healthcare professional (HCP). The messiness of real life is edited down to a clean list of symptoms, outcomes and measurables. Science trumps human stories. However, science without the human stories falls short of reality. The patient world is multidimensional and what may seem irrelevant, clinically, may be crucial to managing and treating a disease optimally.

Mapping patients’ journeys

Let’s take patient journey research as an example. As a global healthcare market research agency we are asked regularly to map out patient journeys. Sometimes the language changes and clients have their own corporate template, but essentially the task is the same: to produce a pathway marking touchpoints with healthcare practitioners, timings, triggers and barriers to progress. The skill is to condense all we hear into a neat narrative and graphic that can be embedded in an organisation and used to improve clinical interventions and patient flow, and optimise prescriptions. Interestingly only around half of the patient journey projects we are commissioned for include patients themselves. Too often we need to put the case forward for the inclusion of patients, and this I believe is a clear demonstration that there remains a gap in the understanding of the real value of the patient perspective.

Directly engaging with patients

Only by engaging with the patients directly can the true patient journey be mapped and understood. If they are not included then vital information is lost and decisions are made based on the physicians’ restricted perspective. HCPs cannot know in any detail what happens between appointments. Their hasty consultations cannot fill all of the gaps in their knowledge. Only patients can tell you how the late diagnosis came about.

Filling in the gaps

What happened between those hurried, irregular appointments? Why did they disappear off the radar for a year? Why did they give up taking their medication after only three months? Was it something the doctor said or did, or something they didn’t say or didn’t do? Sadly their HCPs know only a fragment of the picture.

One reason that the HCPs don’t know the full story is that patients don’t tell them very much. In fact, patients often give a poor account of what has happened to them between appointments. Partly this is because they feel hurried and are on ‘foreign turf’. But it is also because they believe the doctor only wants to hear the edited clinical highlights. What has changed since they were last there? The consequences of the symptoms on their daily activities are often passed over as too irrelevant to mention. The background hum of symptoms is forgotten, ‘normalised’ and considered insignificant. The emotional and social impact of the disease is left out in order to try and speak the HCP’s ’language’. So a patient journey solely based on what HCPs tell us will inevitably lack vital insight and overlook crucial decision moments.

Gaining a greater understanding

By conducting journey research with patients alongside the HCPs, we can not only understand what lies behind the patient’s experience and behaviour, but we can identify additional decision moments for pharmaceutical companies, when intervention would be desirable and could lead to better clinical outcomes. If information is lacking or misunderstood by the HCPs, corrective measures can be taken. As well as working with the HCPs, pharma can also provide patient support to lift their knowledge of the disease or improve adherence.

A ‘messier’, more convoluted route

Yes, including patients in the overall journey will be ‘messier’. It will introduce disconnects between what patients say and HCPs say. It may undermine the clinician’s nice, linear view of the journey and present a more convoluted, less logical route. But the combined journey will be richer and more accurate. It will present more opportunity for intervention and greater insight into what is taking place.

A richer and more accurate experience

The clinical perspective of the HCP of the patient journey is crucial but the human story telling the patient experience of the journey is equally important. Real life isn’t just clinical. Diseases affect people - people who spend most of their lives out of hospital and not in surgery. Your drugs ‘live’ with them in a world which is messier than a laboratory but it is the real world and that is what needs to be taken into account.

Jane Barrett is director of patient insights at The Patient Centre, Cello Health Insight