Improving Relationships Between Industry and Patient Organisations

It is now almost universally understood that all stakeholders need to be involved in the co-creation of new therapeutics and treatment pathways to optimise their eventual uptake, utility, and impact. Several initiatives have been launched in recent years to try to increase patient representation in these discussions. However, the path is not smooth, guidance not 100% clear to all, and the processes involved are not yet streamlined. This is something that the Charities Research Involvement Group (CRIG) have worked to address in recent years. CRIG is a collaborative group of people from a wide range of charities who, back in 2019, produced guidance for charities to help them get more involved in research. In early 2022, they responded again, when Versus Arthritis, one of their member charities, spearheaded a project focused on the lack of information about how pharmaceutical companies were engaging patients (and other partners) and how they want to engage in the future needed to be addressed for charities to be able to plan and partner efficiently.

What happened?

The project was streamlined and focussed. A comprehensive literature search was completed to provide robust background knowledge, then a survey was co-created and distributed to many partnering pharmaceutical companies. Responses were gathered in, analysed, and discussed at a working group of charity members and a representative from the Association of the British Pharmaceutical Industry (ABPI). Several recommendations were made for the future:

Companies and POs

Develop and support personal relationships

Build an understanding of each other

Develop overarching strategic framework

Patient Organisations

Build an understanding of the Codes of Conduct

Develop your parameter for an effective partnerships 


Engage with patients and POs earlier

Clearly communicate contact person 

Improve SOPs and infrastructure 

Build on template contracts

The report outlining all results and recommendations can be found here.

A truly special experience

MediPaCe was privileged to have had the chance to get involved and support this work with Charlotte, Research Executive at MediPaCe, being invited to work alongside Claire Nolan, a core member of CRIG and previous employee of MediPaCe. The results of the work are extremely interesting and will help to shape the future of patient engagement, but what made it really special was the way this amazing group of people worked together to make it happen. Here’s Charlottes reflections in her own words:

“From the first meeting, it was clear to me that being part of this project would be different. I’ve always found introducing myself to a room-full (or zoom-full) of professionals a little daunting, but I needn’t have been worried. I was greeted by smiling faces, mostly situated in home-studies or dining rooms surrounded by photos of families, pets and summer holidays. The group were catching up with each other’s lives, laughing and reminiscing on old times working together. The environment was positively vibrant and in ways I felt like I was being introduced to a friendship group whose connections to one another was as genuine as their connections to the patients they represented.

When it got down to business, the experience of this group shone. The discussions were rich with knowledge and creative energies about how to go forward with the project. But all of this was surpassed by the group’s commitment to contributing to something bigger. The original idea of ‘community’ meant ‘common unities’ – people with a common purpose, common values, and living (or in this case working) in unity. And that’s exactly where this project came from, a community of charities, researchers, patient partners and industry representatives united by the shared goal of empowering the right groups so that ultimately people affected by health conditions can live in comfort, safety and happiness. As the project moved on, I left for my sabbatical so was no longer directly involved in the project. But based on its final outcome, I do know that a significant amount more work went into it and the group never lost sight of their purpose.

Saying that success should be defined by helping others and making a difference is not unique but living that idea of success certainly was. I consider 2022 to be the most successful year of my working life. This wasn’t because I landed a new promotion or anything of this sort, but because it marked a year of working with the patient engagement community.

This field is full of values-led teams that consider themselves successful for the change they are able to make in other people’s lives and I can’t think of a better example of this than the community that made this report happen. What a pleasure it was!”

Congratulation to CRIG for the amazing work that you do and thank you for inviting us along to help.

Transparency declaration: elements of the MediPaCe work: literature review, survey design, delivery, and results analytics. MediPaCe did not take part in the workshop or report writing stages.

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