Having recently returned to the healthcare communication sector after four and half years working in academia, I’ve been keen to learn how my experience of facilitating public involvement in research would translate to the pharmaceutical industry. So, I was hugely excited to attend this year’s Patient Centricity and Engagement Conference, which encouraged delegates to “Reinvent & Reimagine Patient Centricity & Engagement for Today’s New Patient”. I didn’t know what to expect but can say I was pleasantly surprised by how human and patient-focussed the sessions were, how easy the virtual platform was to use and navigate, and how much the challenges and approaches to patient engagement in academia and pharma overlap.
Hearing again how important it is to share knowledge and experiences, the event has inspired me to produce this mini blog series. Each post will discuss one of the key barriers raised by the delegates and patient advocates and share a few tips on how to address them, curated from my own experience and speakers from the day.
Barrier 1: Making engagement processes more patient friendly
It is often said that the pharmaceutical industry hides behind compliance as an excuse not to engage with patients. For those that are keen to be ‘patient-centric’, some have built walls of legal pathways and papers in an attempt to prevent any breaches of regulatory codes of conduct. But, as many at the conference argued, all this does is slow down or worse, still prevent, meaningful engagement with patients, which begs the question whether it’s really protecting their safety or hindering it. From the patient perspective, not only can it be hugely off-putting to navigate lengthy contracts and complex processes, it can also present an additional barrier for those who have work or family commitments, have English as a second language, or are living with a disability. When all they want to do is help and make a difference, as one of the patient advocates put it, “Why bother?”.
The topic of whether to offer payment to patient contributors also came up a couple of times during the event. From experience within academia, and a general look at conversations in the field, patients and patient organisations should always be offered payment for their time and contribution, as well as have expenses covered where relevant. It should be their right to decline payment, not a company’s. It’s important to be aware that payment can affect a person’s state benefits if they are receiving funds from the Government. But this shouldn’t be taken as opportunity not to try and involve them, or not to reward them.
Fix it by…
- Making the most of existing guidance and support. Patient Focused Medicines Development (PFMD) have created a whole suite of guidance that may help to break down internal barriers and streamline processes
- Not taking the stance that processes are set in stone. Patient engagement should be an iterative process. Monitor ways of working and look to see how the process can be made as stream-lined and patient friendly as possible, while still being compliant
- Shifting attitudes from the default thinking that something’s not possible, to one where we make it possible in an efficient and compliant way
- Committing staff resource to admin to relieve the burden from patients. Provide a key point of contact and make contracts and agreements as short and simple as possible
- Working with regulatory bodies to enable easier collaboration while maintaining patient safety. Both the ABPI and MHRA in the UK are demonstrating how they value patient engagement by launching their own patient engagement strategies. This year’s ABPI Code of Practice was also positioned to support collaborative working. More progress may be needed, but the ABPI are actively working on this and will want input from the pharma industry to ensure it works for both sides
- Establishing a flexible but clear policy on how you reward people for their time and contributions. Clearly communicate that payment can affect state benefits but offer support to enable involvement. In the UK, people can be directed to the Benefits Advice Bureau or Disability Rights UK to get advice. Otherwise, you can always see if there is an alternative that would be more useful than money, e.g., health visits in the community, talks from a topic expert, or simply a certificate of involvement
Liked what you read? The next post in the series will look at ‘Committing time to making meaningful connections’.
Want more inspiration while you wait?
Check out this excellent case study that demonstrates what can be achieved when a company commits to patient engagement for the long term:
- Merck’s “Embracing carers” initiative as presented by Rita Reis, Head of Communications for Mid-Europe & Portugal. With a lot of time committed to just listening to people’s views, the project engaged and worked with carer associations to campaign for greater recognition and support for informal carers