Understanding the patient ecosystem

Market research provides the lynch-pin to elevate the patient perspective across the pharmaceutical industry, but the wider patient ecosystem is often overlooked, despite it being the core context that can drive patient experience.

Observing and exploring the impact a patient’s condition on family and friends, and vice versa, is highly valuable. Often, it is the (adult) children that provide extensive support along a patient’s journey, accompanying loved ones to consultations, keeping track of questions and planning, acting as beacons for ongoing emotional support.

In some cultures, with many generations living under one roof or within close proximity, multiple members of the family share the burden of responsibility. They may help patients administer injections, take the patient to hospital appointments and cover the financial implications of medical care.

Friends are also an important support network for patients. For example, one cannot underestimate the positive emotional impact that a friend spending the afternoon at a chemotherapy session has on a patient.

Talking to the wider network of family and friends can reveal insights and opportunities that may be missed through speaking simply with the patient and primary carer. Family members are close enough to the patient and their caregiver to understand their needs and aspirations, but also have enough distance and objectivity to offer a clear perspective when patients themselves cannot articulate or want to face the issues. 

The impact of siblings on a patient’s perspective

As part of internal research, we spoke to Akshay, an ulcerative colitis patient. A student currently studying veterinary sciences, Akshay was diagnosed aged 13, so had to navigate teenage years, exams and university with his condition. Akshay has a very supportive family but described how his parents were often overprotective and restrictive, impacting his ability to live his life as a normal teenager.

Akshay explained how he would turn to his older brother and sister most often for advice. They would give Akshay perspective on his parents’ position and help him navigate everyday situations with his conditions. Talking to Akshay, it was clear that his siblings had a profound impact on how he perceived and managed his condition. If we had spoken to his brother and sister directly we would have had an opportunity to understand the key messages and language they used to help reassure and support him.

Here we can see the ‘affect’ bias at play; how we feel influences how we think and the decisions we make. When friends and family are able to neutralise and positively reassure the patient, this improves attitudes and perceptions towards disease management for the patient.

An opportunity to intervene

Interventions to support patients do not always need to be targeted at the patient themselves. Specific individuals within the patient ecosystem offer different kinds of support, all fundamental to patient care. Developing messages designed to be filtered through friends and family, while helping healthcare professionals to identify who are the key stakeholders in this wider ecosystem to target, will ensure that patients are fully supported from the start of the treatment journey.

The very nature of patient research is that it is highly nuanced; from practical experiences, to emotional ups and downs, to the specific challenges faced. By widening the research lens, the lid can be lifted on what really drives the patient experience and outcomes. 

By Dinisha Cherodian and Dr Pamela Walker, Incite