Dr Stuart Faulkner, Programme and Operations Manager, Department of Primary Healthcare at Oxford University, and Dr Ana Diaz, project officer with Alzheimer Europe, explain the process behind developing a tool that offers much-needed guidance on the reporting and dissemination of patient engagement activities

How do we facilitate progress in patient engagement (PE)? By learning what was done right – and what could have been done better. 

Reporting and disseminating information of how PE activities are planned and conducted as well as their eventual outcomes is key knowledge for all stakeholders within the patient engagement ecosystem, say the lead contributors of the PARADIGM group who worked to devise this tool. Not only does it encourage broader transparency and trust, this useful knowledge can help other organisations who are already conducting PE or those who are just starting this type of work, ultimately helping the field to move and evolve in a more efficient and systematic way.

“A patient engagement ecosystem needs to be a learning ecosystem. One that is open, responsive and progressive,” says Dr Stuart Faulkner.

“Without this, it can’t evolve and patient engagement stalls.  Knowledge generated when PE activities are undertaken to generate learnings of what worked, what didn’t, what could be done better for who and by whom.”

This might seem simple, but the group’s research suggested that in many instances gathering, recording and reflecting on these basic elements by the engaging stakeholders was sometimes difficult, sometimes not done at all, and where it was done, was not always easy to find or access in the public domain. In short, engaging stakeholders can struggle to learn from previous success and failures and evolution does not happen.

Ana Diaz explains that the reporting and dissemination of PE activities was one of the gaps identified in a gap analysis carried out early on in the PARADIGM project timeline. 

“In many cases, very interesting initiatives lacked the level of detail which I would have needed to have a clear understanding of what was done, how it had been done and what was achieved as a result,” she says. “It made me rethink the relevance of what is reported, when is reported and where this information is available.”

Making that rationale for why the reporting and dissemination of PE activities more explicit and appealing, while supporting that with guidance and tools and how to approach this, should help all stakeholders to better consider what their audiences are for dissemination, what channels could be used, and how they might go about it more efficiently, they add.

As the development of this tool only came as a result of the gap analysis, development time was somewhat limited. And while the gap analysis had identified some areas for improvement in the PE landscape, the group were mindful that this tool needed to be enabling to those that would use it, rather than being overly prescriptive. Another goal was to ensure that it could be used in conjunction with organisations’ existing ways of reporting PE activities and not attempt to replace them, while also being sympathetic to some existing platforms that contained case study reports of PE activities and not simply replicate them. Finding the middle ground between all of those parameters was a challenge, Diaz and Faulkner admit. 

The working group included a broad array of representatives from academia, patient organisations and industry. To begin, the group sought to identify how it could build on and contribute to existing work and tools in this area; exploring concrete examples of tools and templates used by different organisations for reporting and dissemination of PE was key, they say.  And not only did they engage with communications specialists, they also sought to understand to what extent the resulting tool would be relevant to HTA [health technology assessment] and regulatory bodies by involving PARADIGM colleagues with experience in this particular context.

“Overall, the process was iterative and involved regular meetings and discussions among us and with other people outside of the working group. We wanted to capture the perspectives of many different stakeholders and tried to develop a flexible tool which could be used by many different people in many different contexts,” says Diaz.

“Thankfully we had a diverse and responsive working group, great co-leads, and had already gathered a lot of useful information from the Patient Engagement Open Forum, desk research and webinars [but] distilling down that information into short guidance, checklist and template was a lot of work,” Faulkner says.

Both agree that the tool complements many other tools in the PARADIGM Patient Engagement Toolbox, such as those on reflection and reporting of PE activities, for example. But they also see a broader use; Faulkner explains that it can be used in the planning phases of a PE activity to complement the considerations of how to effectively identify and involve the right patients for the right activity, how to manage the work, considerations and conflicts of interest in those involved patients and helping to identify what capacity and capabilities are needed by both the engaging stakeholder and involved patients in creating, reporting and disseminating the outputs and outcomes of PE activities into the public domain.

The tool can be used for planning and conducting the reporting and dissemination of PE activities in the context of medicines development but also of other PE activities in other fields, adds Diaz.

“The tool also promotes the principle that patients involved in the PE activity should be invited and supported to contribute to the reporting and dissemination of the activity. This is very important for patients involved in PE as they should be offered opportunities and adequate support to be meaningfully involved in the whole process, from the beginning of the activity to the end,” she says.