Dr Stuart Faulkner and Laiba Hussain, Oxford University
On Feb 21st 2020, Work package 2 (WP2) held an interactive webinar to disseminate the final results of the identification and analyses of gaps in patient engagement (PE) practises and processes. It offered a unique chance to understand how identifying tangible gaps in PE can inform actionable outcomes in the development of tools, templates, and frameworks for improved patient engagement.
Collective progression towards ‘system readiness’ in PE can be achieved by first looking backwards before going forward. A detailed understanding of where stakeholders needs, expectations and preferences for effective PE are and are not being met in reality, is a key link in ensuring that new tools and frameworks are relevant and fit for the purpose. A gap analysis does just that.
Stuart Faulkner led the twenty-nine strong audience from the consortium, the PARADIGM International Liaison Group (PILG), and a few new faces through the webinar in an easy-to-understand and interactive fashion. The hour-long session briefly introduced the audience to the work of PARADIGM before explaining the importance of identifying gaps in practices and processes of PE. Work package 2 has continued the robust narrative running through PARADIGM to consolidate a number of known gaps and surface many lesser-known gaps and give some context to them.
As discussed in the webinar, the methodology used to conduct this work included sourcing a large sample of PE initiatives from existing global databases and performing an in-depth review using available documentation combined with important insights from some of the initiative representatives. Previously defined criteria for effective PE by work package one (WP1) was translated into a structured question and answer framework to create an online gap tool that was used to submit responses to the in-depth review. This co-creation process was important for the success of the analysis and acted as a collective knowledge gain for all of those involved.
Analysis of the forty-four criteria against seventy PE initiatives returned eighteen gaps across eleven themes. Two general gaps included an overall lack of structured reporting of the PE activities, and a lack of consistent translation of criteria defined in the framework carried through to its implementation in case studies. Other gaps included amongst others; a lack of reported attention to patient selection criteria, a lack of regularly following communication and dissemination plans, and ambiguity as to patient accessibly and comprehension of legal and ethical documents, plans and templates. The webinar reveals all eighteen in detail.
The webinar concluded by demonstrating how the gap analysis has informed the development of existing tools being created within PARADIGM including; the Code of Conduct, Conflict of Interest, and Community Advisory boards (CABs), and new tools such as lay language summaries of existing legal agreement guidelines.
From an industry perspective, Malar Subramaniam from Bayer offered an interesting viewpoint on the timeliness of this work.
“This is very timely for Industry because, while PE is being done, the gap analysis can provide the industry with a starting point- or even a mid-point- in developing PE tools that have maximum impact.”
From the patient organisation (PO) perspective, Karina Huberman from EATG reflected afterwards on the value of this analysis to PO’s.
“The inventory of existing gaps in PE practices allows to have a clear picture of what already exists and what is missing, moving from presumptions to objective information, and therefore enabling further progress by focusing efforts in the areas where needs were identified.”
The webinar concluded with a Q&A session and a brief look back at PARADIGMs intended outcomes which discussed how the different WPs link together to create a bridge for the evolving PE ecosystem. One attendee asked about how PARADIGM is including the considerations of young people in the tools being created and highlighted the importance of current resources available to help engage with young people. It was highlighted that the tools being developed by PARADIGM have oversight from representatives from San Joan de Deu Children’s hospital and Kids Barcelona. The aim is that all PARADIGM tools will have to signpost to help other stakeholder groups and where possible, other patient populations such as young people and patients with dementia, to adapt the tools accordingly during their implementation.
We hope that the attendees of the webinar will have not only been inspired but have left the session with the knowledge and practical know-how to elevate their PE tools to the next level as well as maximising their potential impact.