Opening up about patient engagement
November 9, 2021 | patient engagement
Read the third blog of the series looking at key barriers to effective patient engagement in pharma
Inspired by this year’s Patient Centricity and Engagement Conference, Philippa Pristerà uses this mini blog series to reflect on key barriers to patient engagement raised during the event, and share tips and guidance on how to overcome them, collated from her own experience and those shared by speakers from the day.
Opening up about patient engagement
Two patient advocates who spoke at the conference both described pharma as “secretive”. It seemed to stem from the lack of transparency and communication around how and when they would be engaged, and when they couldn’t be. One had recently been stopped from attending a conference tailored for healthcare providers, but no one explained to her why.
This kind of ‘blocking’ can create a feeling of secrecy and depreciates industry messages that they see ‘patients as partners’. She also made the brilliant point that pharma companies do very little to communicate the fact that patients can get involved with their work – “I see the good side of pharma, but you don’t show it!”.
Health research organisations, academic research centres and charities make ‘How to get involved’ a prominent statement on their websites. But pharma companies don’t often showcase the breadth and depth of their patient engagement activity to the public and do even less to provide easy paths for other people to get involved. There are challenges at all stages of research and medicine development, but so few of them get voiced to patient groups to help solve them.
Regulations within the pharma industry may make it difficult to maintain an open dialogue at every step of a medicine’s development. But, encouraging regular communication with patients and being open about where R&D is at, and the shared challenges that exist could be adopted by all.
Fix it by…
- Shouting about your patient engagement. You do more than people know, so open up and be transparent about the engagement activity that is going on
- Creating opportunities for people to get involved in an open and inclusive way. Let people know what issues you are facing and how they can help
- Committing time and resource to frequent communication. This includes sharing more about your research activity and issues you face, sending regular updates for shared projects, and providing a continued point of contact for ad hoc check-ups
- Providing feedback on the project so patients know their contribution makes a difference. This makes them feel valued, demonstrates a company’s commitment to act on their insights, and reinforces positive feelings that will make them more likely to engage with future work and even inspire others to do the same
Missed a post in the series? Catch-up here:
In need of further guidance?
- The Patient Focused Medicines Development team have recently launched a new quality framework that can be used as both a planning tool and assessment tool to ensure you are carrying out high-quality, meaningful engagement.
- For something less focused on medicine development or medtech, check out the UK Standards for Public Involvement, which were co-produced by a UK-wide partnership to improve the quality and consistency of public involvement in research.
This content was provided by Cuttsy + Cuttsy
Company Details
Latest Content from Cuttsy + Cuttsy
Clinical trials explained: Why colour matters…
Colour can be used to emphasise mood, evoke emotions, and determine first impressions of a brand. Find how to use colour effectively in your next clinical trial campaign.
Clinical trials explained: Why branding matters…
With nearly a decade’s experience supporting clinical trials, find out why we think humanising trials through design is so important.
DPHARM2023 – Five key themes impacting clinical trials today
Throughout three fascinating days of conference, some key themes emerged that are impacting study teams and the effectiveness of their clinical trials on a daily basis.
Flexible working: a fad or the future?
As the Flexible Working Bill gets written into UK law, we took a look at what this means for businesses of all sizes and specialities.
Looking for a job head first
During Health Information Week, we reflected on mental health and wellbeing within the workplace. Cuttsy+Cuttsy’s mental health first aider and HR Manager, Kate McCabe, shared some thoughts on what mental…
Patients as Partners – putting people first in clinical trials
Cuttsy+Cuttsy’s key takeaways from the Patients as Partners conference 2023
What are the ingredients for a perfect partnership?
Perfect partnerships can take many forms. Just like avocado and toast or tea and biscuits, all good on their own, but better together.
Cuttsy Cares Continues…
Cuttsy+Cuttsy’s charitable programme — Cuttsy Cares — has been running for the past 2 years, providing the team with the opportunity to support causes close to their hearts.
B-lown away by our first CDP rating
A catch up with Louise Jones, Cuttsy+Cuttsy’s sustainability officer, on what was achieved in 2022, the agency’s latest environmental assessment with CDP and a look ahead to 2023.
Cuttsy+Cuttsy campaign takes health literacy to the North Pole
Our 2022 Christmas campaign saw Santa’s agency elves creating tailored materials for patients. But were the examples guided by the principles of health literacy? Were they naughty or nice?