OPINION19 September 2018

Widening the patient lens

Healthcare Opinion UK

In the first of a three-part series on patient market research, Dinisha Cherodian and Dr Pamela Walker of Incite look at the role of patient advocacy groups.

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The past five years have seen a dramatic shift from product to patient focus in the pharmaceutical industry. Market research has provided the lynch-pin to elevate the patient perspective across the industry. That said, the wider patient ecosystem is often overlooked, despite it being the core context that can drive patient and treatment experience.

Patient advocacy groups are highly respected by the medical community. They are also invaluable to patients and their families, providing both emotional and practical support. But the relationship between patient advocacy groups and pharmaceutical companies is often delicate.

Market researchers can effectively bridge the gap. Leveraging their status as independent, unbiased observers, they can approach the discussion as objective third parties with transparency. Or, by simply observing a support group, a researcher can learn about the patients from the discussion, without asking a single question.

In one case, Incite researchers observed a patient advocacy group and identified a behaviour change intervention.

The researchers were invited to sit in on a group meeting for patients with a rare neurological disease and their caregivers. On this occasion, patients were voicing their concerns to a consultant neurologist. A salient theme that emerged was that patients struggle with fatigue. The consultant and the head of the advocacy group introduced ‘spoons theory’ to offer a possible solution and context.

Spoons theory is a tool originally developed by Christina Miserandino, a Lupus patient. She said the difference between being sick and healthy is having to make choices and used a spoons analogy. While a healthy person had unlimited spoons, if a patient has 15 spoons a day they calculate how many activities they can realistically complete before fatigue takes over: three spoons for a shower, five spoons for lunch with a friend, five spoons for shopping, and two spoons remain – too few to take the dog for a walk but enough to do the dishes.

At the advocacy group, one of our researchers met Jenny, a myasthenia gravis patient. She was already using spoons theory and explained how it had revolutionised her attitude and approach to her condition. She had been trying to live her life ‘at 100 miles per hour’ just like she did pre-diagnosis and couldn’t understand why she was so exhausted each day. The spoons helped her to reframe her days and live a more full and normal life.

An important bias from cognitive psychology is at play here, that of ‘self-efficacy’. Spoons theory gives patients the confidence and self-belief to make the right decisions activity-wise. As a result, they can feel better and stronger at the end of each day. Most importantly, over time this can have a positive impact on both physical and mental wellbeing.

Advocacy groups have the networks, experience and means to help develop and share patient-relevant tools. This can also be reassuring for the healthcare provider (HCP), knowing this support system is available, offering practical solutions for their patients. Spoons theory itself is a perfect example of a simple, visual technique that patients can easily incorporate into their daily lives and one that delivers immediate benefits.

By Dinisha Cherodian and Dr Pamela Walker, Incite