Excerpts from an article in pharmaphorum featuring PIF’s Chair, Sue Farrington:
Pharma has a real willingness to listen to the patient voice – but how best can we turn that desire into action?
Over the next few months, pharmaphorum will be talking to representatives from a number of UK advocacy groups to find out how industry could better listen to the patient voice in various therapy areas.
To kick off the Listening to the Patient Voice series, Sue Farrington, chair of the Patient Information Forum (PIF), talks to pharmaphorum about how embracing collaboration can facilitate shared decision making.
The pharmaceutical industry is waking up to the fact that patients, not clinicians, are its real customers. And while there are barriers to redressing this balance, working more collaboratively with patients, healthcare services and advocacy groups can help.
Outlining the current situation, Sue said: “In relation to the patient information produced by pharma, there are two areas of unmet need.”
“The first is the accessibility of information. It needs to be understandable and it needs to consider health literacy. This is a common issue across the board, which many companies are trying to address.”
The second area is making sure that when information is produced, it is embedded into the patient pathway. Co-creation at every point of the development pathway, from identifying information gaps to creating and testing the resources, is the answer according to PIF.
However, that’s easier said than done when considering the restrictions the Association of the British Pharmaceutical Industry (ABPI) Code of Practice places on communication between companies and patients.
“At PIF we have seen a growing recognition from pharma of the importance of listening to the patient voice,” said Sue. “There is a real willingness to do it, and some companies are more ahead of the curve than others, but the Code can make it very difficult.”
With a growing emphasis on shared decision making, the first step needs to be ensuring everyone can access the basic information, no matter what their level of health literacy.
Between 43 and 61 per cent of working age adults in England do not have the literacy and numeracy skills they need to understand and use health and wellbeing information.
The Academy of Medical Sciences recently said that patient information leaflets (PILs) included in medical packages often failed to meet the criteria for accessibility.
In a report entitled How can we make better decisions about medicines? the Academy noted: “Patients are struggling to find clear and reliable information about medicines. The information leaflets that come with medicines are often unclear and unhelpful. We want them all to be simpler and clearer, so patients understand the potential benefits of medicines and their possible side effects.”
“Previously, information produced by pharma was designed for post-prescription. Now there are so many choices of treatments in some long-term conditions meaning that pre-prescription information is so important – we need materials that can enable that conversation,” Sue explained.
Asked how pharma could help address these needs without being seen to be promoting medicines to patients, Sue said that working with healthcare services was key.
Her team is currently working with a number of pharma companies through PIF’s Perfect Patient Information Journey initiative. Published last month, the seven-step plan was designed to help health services make sure patients get the right information at the right time in the right format.
“This approach works because it involves clinicians and patients. It’s about creating resources that enable conversations and it all takes place within a health service setting,” Sue said.
Overall, the industry is starting to embrace the principles of co-creation, but there are still barriers – most notably the ABPI’s restrictions on public/pharma communication. But by working collaboratively with advocacy groups and healthcare services, companies can get close enough to listen to the patient voice and make meaningful change.