Patient Engagement - Simple as 1,2,3?

“We know you don’t have X or Y, but we don’t know what you have.”

How many patients have been told this during their time living with a rare disease? How many patients have then been left to go home, feeling trapped that they don’t feel validated, but haven’t been given the green light that they are OK?

“You’ve got Z, but we don’t know how to treat it,” is no better for the patient either. Patients and their families are then left wondering what happens next, whether a drug will ever become available, and if so, when?

These two situations place huge burdens on patients and their families. In an attempt to gain support they make every attempt possible to link up with other patients, other carers, and potentially at later stages with pharmaceutical companies when drug targets become an option. This has the potential to be incredibly co-creative and lead to the generation of new pharmaceuticals but can also include an element of risk.

After hearing too many patients use these two phrases, I realised I needed to change my approach within the pharmaceutical sector. Having been in pharmaceutical market research for over five years, I took my experience and made the leap into medical writing. My writing specialty? Patient engagement. In the lead up to speaking on the panel at SMi Orphan Drugs and Rare Diseases conference in London, here are my main thoughts on patient engagement.

As a writer in patient engagement projects you often act as the mediator between pharma and patients. The writer acts as the pebble being dropped into a lake, creating ripples that filter through the pharmaceutical organisation. There’s a fine line between understanding that a drug may not stand up against the existing drugs, whilst also appreciating that patients are heavily invested in seeing a product perform well in trials. This can undoubtedly lead to disappointment amongst patient groups should a trial fail, so patients must be warned of this throughout the whole process in order to limit any potentially negative consequences on the patient should that situation arise.

It’s imperative to try to understand, from the patient’s perspective, the effects of experiences caused by a condition on a patient’s life. While it’s impossible to ever fully step into patients’ shoes, the greater the understanding of the implications of their condition, the better a pharma company can later implement complete therapeutic solutions. The most important thing to remember here is that this is not about collating a “patient journey”. Patients are not on journeys with a sunny destination (I wish!!). Their lived experiences must be handled sensitively, and without use of euphemisms that downplay their situation.

Patients must feel valued for their opinion and sharing of experiences. It’s often said in the professional field that employees are not paid for completing a piece of work, they are paid for the years of experience that enabled them to complete that work. The same should be true for patients. Whilst guidelines and rules are in place to prevent marketing directly to patients, it shouldn’t be that patients are actively out of pocket due to wanting to support other patients. Expenses at the very least should be covered, but experience should not be free either.

Engagement with patients within the pharmaceutical field is steadily increasing, with benefits for both parties. Patient engagement within the rare disease field is also slightly different to the more “common” illnesses. Patients self-select and get involved, because patient numbers are small, and the clinical base is also a narrow field. Where there are no treatments at all there will undoubtably be a greater push from patient organisations to find a treatment, and at best, a cure.

As a writer this is an incredibly exciting time, as we see pharma clients feeling more motivated in their roles as a result of greater patient insight. Most importantly, however, patients benefit from improved quality of life, treatment optimisation and extended duration of life. The more that pharma understands the person with the condition, the more it can help that person’s whole life, as opposed to just helping with symptoms.