Authors: Zsófia Bakonyi, Camilla Baouchi Habre and Chi Pakarinen (PARADIGM team)

As part of a new online series, PARADIGM sought to explore the many angles of patient engagement in real life, by looking at learnings from six different stakeholder organisations 

Do you really know what patient engagement is? What it means, what it involves, what are the outcomes expected from different stakeholders? Do you know how to do it, when to do it and how to capture the impact?

To give us an idea of what people Google when it comes to patient engagement, we tested the search with “Patient engagement is…” – and the result is myriad! In addition to the same questions repeating, the first page results also provided definitions such as patient engagement is an ideal situation where the patient or public is involved in healthcare decisions made about them, and that patient engagement is everyone’s responsibility. 

Most interestingly, people also asked Google about the patients’ role, the measurements, the differences between terminology and tools – “What are patient engagement tools?”. To help answer some of these questions, we have gathered a mini-series of examples from different stakeholders who are doing patient engagement and enabling the systematic change within their organisations. Within each of the articles, the editorial team has gathered some tips for you to help you start your own patient engagement journey. Save the dates below and be sure to share these articles with your network – sharing is caring!

What and when

In this mini-series of six articles, The Children’s Tumor Foundation shares their learning in providing training to the patient community in order to enable more involvement within the medicines research and development (R&D) area (this article is released on Mar 5th). To this end, Novartis shares their experience in embedding patient engagement at all stages of the drug development process that was met within the company with both enthusiasm and scepticism (this article is released on Mar 9th). The Canadian Agency for Drugs and Technologies in Health (CADTH) outlines its challenges and successes of integrating patient engagement processes across all programmes from the health technology assessment (HTA) standpoint, highlighting the importance of sharing and replicating good practices from other areas within the health system (this article is released on Mar 12th). 

Moving from an organisational integration of patient engagement to the activity and project level, Pfizer shares how a multi-stakeholder group was formed to plan and gather more patient insights for a clinical trial and how these insights ended up influencing the changes made in the trial protocol that hopefully makes the trial more bearable to patients and carers (this article is released on 16th). Another patient engagement project is shared by the NIHR biomedical research centre of University College London Hospital where cancer patients played an instrumental role in the development of a digital health toolkit. The patients and carers’ roles evolved and expanded as the project progressed and the value of their involvement is well distilled in the lead researcher Dr Goodfellow’s comment “The insights the patients have brought to the project are immeasurable, they have made such a difference and significantly increased the chances of this project being successful. This is the first time I have actively involved patients in my research and I can’t imagine working on another project without them.” (this article is released on Mar 19th). 

We hope you enjoy this mini-series and look forward to an engaging discussion in our social media channels with the hashtag #PARADIGM4Real. Make sure to tag @imi-paradigm when sharing your experience on #patientengagement!