Smaller companies may not be able to match the resources and expertise of larger players, but their agility helps them move quickly to put patients at the centre

Communicating research results is a vital element of medicines development. The traditional model for pharma and biotech companies is to publish clinical studies in journals and through scientific conference posters. The target audience for both is the same: prescribers.

But health care professionals are not the only stakeholders with an interest in results of clinical research. Patients – the ultimate beneficiaries of medical advances – are hungry for the latest information on new and emerging therapeutic options.

Increasingly, patients and patient advocacy groups are a feature of medical congresses: they join panel discussions, listen to plenary sessions and scour exhibition halls in search of abstracts and posters that might offer new hope for newer and better treatments.

True patient-centricity

Scientific communication between experts can be dense and impenetrable to non-experts, leaving patients locked out of conversations about their condition. Now, plain language summaries (PLS) are helping to translate jargon-heavy research papers and conference posters into more digestible text. This is a major step in delivering on the promise of patient centricity.  

‘All pharma companies say they are patient-centric,’ says Sara Elgott, Director of Global Patient Affairs at MedDay Pharmaceuticals. ‘By taking the time to convert the results of your trial into a PLS, companies can show they are serious about engaging with patients. We view this as a way of ensuring MedDay is truly patient-centric.’

MedDay is a small biotech start-up with a product in phase III clinical trials for progressive Multiple Sclerosis – an area of major unmet need. They are one of several companies working with medical communication experts such as Envision Pharma to bring their science to a new audience. Beginning with an MS congress in the autumn, all MedDay posters will have a QR code which can be scanned with a smartphone to bring users to a plain language summary of the results.

It’s a growing trend, says Sara. ‘PLS are not mandatory but they are best practice,’ she explains. ‘It takes time and resources – and the support of outside expertise – but we believe it is a worthwhile investment.’

Compliance and communication

In late November, PFMD supported Envision Pharma in hosting a workshop in London to explore how plain language summaries can be co-created by scientists and patients. The one-day event looked at some of the practices, tools and templates used by leaders in the field in creating digestible versions of cutting-edge science.

Attendees included patient advocates and pharma companies large and small. Sara, who represented MedDay at the event, said the interactive and well-organised workshops inspired her to embrace PLS in her own company.

Getting buy-in and budget from colleagues can be a challenge for smaller companies keen on engaging with patients. Compliance issues are also a major hurdle – and a common excuse for maintaining the status quo of connecting only with medical professionals. But Sara says several bigger companies have found fully compliant ways to bring their science to patients.

‘The workshop inspired me to work with colleagues to translate my passion for PLS into action,’ she recalls. ‘Pfizer explained to attendees how they were taking a leadership role in making PLS the norm. Compliance is a priority, but it was great to be able to say to colleagues: If Pfizer have done it; we can do it.’

Selling the idea internally required concrete examples, cost estimates and visuals to present at key budget meetings. PLS is a novel addition to scientific communication so a strong case for change is needed, says Sara.

But, despite not having some of the advantages of larger companies, there are also benefits to being small and nimble – it’s easy to knock on the door of internal decision-makers and make things happen quickly.

‘There are fewer layers of management and fewer people to convince when we want to change how we work,’ says Sara.  ‘These days, patients are more educated and informed about treatment choices – they are entitled to read more about how products in development can make a difference, in a balanced and non-promotional way.  I’m convincing my top management team that PLS’s are the way forward!’

More on the topic: Plain language summaries: the patient view