Pharmafile Logo

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 

Celebrating award-winning patient-centricity

Every year, Cuttsy+Cuttsy choose to sponsor 'Patient Programmes' at the PM Society Digital awards. Here's why.

Cuttsy+Cuttsy’s first EcoVadis rating comes back silver!

Louise Jones, Sustainability Officer at Cuttsy+Cuttsy celebrates their new silver sustainability rating

Cuttsy+Cuttsy gain highly regarded PIF Partner status

As official PIF Partners, Cuttsy+Cuttsy will be supporting the Patient Information Forum raise awareness of the PIF TICK.

Serious about sustainability?

Get to know our new Sustainability Officer here at Cuttsy+Cuttsy

Cuttsy+Cuttsy are named as one of the Best Places to Work

Campaign Magazine have released its 2022 ranking for the best places to work and Cuttsy+Cuttsy have come in right at the top at No.3.

Promoting trust: Cuttsy+Cuttsy become a PIF Tick accredited agency

Cuttsy+Cuttsy join a host of noteworthy healthcare charities and institutions as one of the first healthcare communications agencies to receive the Patient Information Forum’s seal of approval – the PIF...

Listening to heads AND hearts in healthcare

We talk a lot about using emotions in healthcare communications, but not as much about the business intelligence(BI) behind it. Find out why it matters and why we are proud...

Does being an independent agency really matter?

With Cuttsy+Cuttsy ranked as #6 in the Independent Agencies listing from PM Live’s T40 Creative Healthcare Agencies 2021, Mathew Cutts reflects on what being ‘independent’ means to him.

Opening up about patient engagement

Read the third blog of the series looking at key barriers to effective patient engagement in pharma

Committing time to making meaningful connections – top 5 tips

Read the second blog of the series looking at key barriers to effective patient engagement in pharma