Are your internal processes drowning out the patient voice?

Greater patient involvement is among the stated aims of the ABPI, so why do companies up and down the country say the association’s Code of Conduct makes engagement difficult?

According to Sheuli Porkess, executive director of research and innovation at the organisation, it is the procedure put in place to follow the code, rather than the code itself, that creates barriers.

Regulatory reason

It’s no secret that the pharmaceutical industry operates under some of the strictest regulations in the world.

Pharma takes this responsibility seriously, with internal processes for just about every interaction with just about every person being ingrained into the structure of just about every company.

This fixed way of working can present barriers to patient engagement – but it doesn’t have to be that way, said Sheuli.

“The problem isn’t a lack of appetite to adapt, but a nervousness that sets in when activities and interactions do not follow the traditional pattern”

“There is nothing in the code that says: ‘you can’t do this work’. The code has some absolutely brilliant principles around patient engagement.

“It says it has to be transparent, and that everyone needs to understand exactly what is being asked of them, why it is being asked of them, and who is doing what.”

The barriers appear when those principals are translated into a company’s internal processes, she added.

The problem isn’t a lack of appetite to adapt, but a nervousness that sets in when activities and interactions do not follow the traditional pattern.

Appetite for change

Sheuli said: “The industry is here to develop medicines that address unmet medical needs. It is becoming increasingly clear that to understand that need, you need to learn from the people living with the condition.

“Absolutely, you need to understand the research and the epidemiology, but when you say, ‘How am I going to create a solution and what does that solution need to look like?’, you need to involve the user of that solution.”

The companies that have embraced the patient voice successfully are those that have had staff actively working from within to make internal processes more practical.

These “champions” build consensus around the importance of involvement and work to adjust procedures so they become more “patient-friendly” without being any less compliant.

Simple changes, such as ensuring patients don’t have to wait 60 days after a meeting to get their train fare back, make all the difference, said Sheuli.

“What you need is for someone to explain to all the various people in the company how to create a process that is absolutely compliant, but works in patient-focused situations,” she added.

“When an ABPI member comes to me and says: ‘I’m not sure how to do it, the code says I can’t’, I ask is it the code or is it actually their own internal processes that need to be adjusted.”

Practical help on hand

The ABPI has said it is focused on helping companies overcome these barriers, and is involved in a number of projects designed to offer practical assistance.

Along with other industry groups as well as patient and research charities, it is a member of a European Union Commission project that is creating patient involvement tools and metrics.

Called PARADIGM, it is currently moving from the scoping to the developing stage and is expected to report its findings in the not too distant future.

In June, the association will team up with the Association of Medical Research Charities and the National Institute for Health Research (NIRH) to hold the third annual Pioneering Partnerships: Putting Patients First conference.

A “big chunk” of the meeting, which is aimed at industry research charities and other interested groups, will be on patient involvement in clinical research.

“The NIHR is a new partner for this year which is very exciting,” said Sheuli.

“We want to share best practice by getting the audience engaged in speaking to each other and really stimulating new ways of thinking about this.”

During the meeting the ABPI will also launch a new “source book” which aims to give companies all the information they need to engage with patients within the confines of the code.

“There is a lot of guidance out there already, but we thought it was important to bring it into one place,” explained Sheuli.

The aim of the conference is to offer practical advice on ways to bridge the gap between pharma and patient, while maintaining the high levels of integrity the code was designed to instil.

“But it’s also about listening to feedback because the code is continually being reviewed and evolving,” she said, adding it was a “very exciting time”.

Engaged in engagement

The industry appears to be moving in the right direction, with the overwhelming majority of companies now actively engaged in making engagement happen.

And for good reason, according to Sheuli and the ABPI.

“The benefit of doing this work is that we develop medicines that actually make a difference,” she said.

“We all know that developing a new medicine needs the investment of hundreds of millions of pounds and takes years. If we’re going to do that, surely we want to make sure those medicines work as effectively as they can?”

About the Author

Amanda Barrell is a health and medical education journalist, editor and copywriter. She has worked on projects for pharma, charities and agencies, and has written extensively for patients, healthcare professionals and the general public.