Pharmafile Logo

Embracing the Patient Voice Within Publications

September 5, 2023 |  

This whitepaper will explore multidisciplinary perspectives on how we can better engage patient communities in publications to optimize the value of their contributions, while navigating any uncertainties and reluctance from internal and external stakeholders.

The biopharmaceutical sector continues to recognize the value of integrating the voice of the patient community into its activities.

Despite growing recognition of the importance of patient partnership within publications, uncertainty remains regarding how best to involve patients and where in the process this involvement should happen. Furthermore, although many of our colleagues working in Medical Affairs and publications have established the goal of engaging patients in publications, possibly as authors, their own internal guidance on publication development may create roadblocks. Compliance and regulatory concerns can limit opportunities to partner with patient communities, and the occasional reluctance of physician authors to include patients as co-authors further exacerbates the situation. Additional barriers arise from the general uncertainty in the scientific communications community as to how and when to engage patients in an appropriate manner that ensures a positive experience and recognizes the resource challenges of advocacy groups.

This paper will explore multidisciplinary perspectives on how we can better engage patient communities in publications to optimize the value of their contributions, while navigating any uncertainties and reluctance from internal and external stakeholders. We recognize that we are all learning together, with the shared goal of evolving our practices to fully embrace the voice of the patient while adhering to publication best practices and compliance. We welcome and encourage feedback from our industry colleagues to further refine our approaches.

This article was originally published in our latest whitepaper “Embracing the Patient Voice Within Publications”. To learn more about the multidisciplinary perspectives on how to better engage patient communities in publications, read the full whitepaper.

This content was provided by OPEN Health

Company Details

 Latest Content from  OPEN Health 

Are you using Patient-Reported Outcomes (PROs) in your oncology trials? If not, why not?

A recent blog, published by Sarah Tressel Gary and Rinah Yamamoto called “Patient-Reported Outcome Data in Oncology Trials - Part 2: Clinical Benefit and Patient Preference”, has sparked our interest....

Spotlight interview: 15 minutes on insights and market research in pharma

Neil Rees, Head of Research, OPEN Health Patient & Brand Communication takes 15 minutes to answer some key questions on insights and market research in pharma

OPEN Health reflections on the World Orphan Drug Congress in Barcelona

Having just returned from a very busy but hugely enjoyable few days at congress, I wanted to share our views on the event and key themes that our healthcare communications...

Patient journey mapping: exploring the clinical and the emotional journey

By Chris Hodgson, Neil Rees, Sumira Riaz and Karen Petticrew While we can all agree that the value of developing a patient journey map cannot be underestimated when exploring the...

OPEN Health announces the integration of Pharmerit International into the group

OPEN Health has today announced the integration of Pharmerit International, a global leader in health economics and outcomes research (HEOR), into its group of companies.

OPEN Health mobilised to support outcomes with gene and other advanced therapies

Harnessing the power of collaborations to bring real insights and improve outcomes

Spotlight interview: 15 minutes on PR in pharma

Vicky Bramham, Managing Director, OPEN Health takes 15 minutes to answer some key questions on PR discipline.

OPEN Health PBC recognised as No. 1 independent creative agency

We’re No.1! PMLive have named OPEN Health Patient & Brand Communications as the no.1 independent creative healthcare agency. The aim of the PMLive Top 10 lists is to highlight those...

Spotlight interview: 15 minutes on medical and scientific writing

Rob Pilbrow, Global Managing Director, Medical Writing, OPEN Health takes 15 minutes to answer some key questions on scientific writing

Spotlight interview: 15 minutes on healthcare advertising

Marie Little, Managing Director, OPEN Health Patient & Brand Communications takes 15 minutes to answer some key questions on healthcare advertising