PARADIGM understood from the start that the success of the initiative is dependent on a number of factors, none more important than understanding the perspectives and needs of the diverse set of stakeholders associated with the patient engagement ecosystem. These perspectives are important in the design, development, dissemination and implementation of PARADIGM; essentially these underpin the entire initiative.     

Therefore, significant emphasis was placed on conducting a stakeholder survey and beginning analysis of it within six months of the project’s inception.  As planned, the survey population reflected the type of diverse voices that are critical to the success of the project. There were over 500 respondents from 22 countries, and the survey was fielded in 14 languages.

In 2018, workshops were held with children and young people living with health conditions, people with rare diseases, and people living with dementia. These ventures provided an avenue for gaining insights for the construct of the survey, and for validating the survey results. Additionally, through the use of the Delphi technique, we began to distil and prioritise the core messages from the survey with the support of 79 experts. A blog post and an interview from a focus group consultation were published. Additionally, a report compiled from a consultation on health technology assessment was presented at the ISPOR conference, which is the professional society for health economics and outcomes research.

A significant focus in 2019 is to build a set of minimum expectations in patient engagement, as well as a set of criteria with which to assess patient engagement. An internal report on the survey results, along with interactive sessions within the consortium, will promote the transfer of knowledge within the project, fostering the development of the PARADIGM patient engagement toolkit.

The fielding of the stakeholder survey was a significant accomplishment last year, and now the goal is to ensure these insights are integrated across the various work groups within PARADIGM and shared with the diverse stakeholder groups supporting patient engagement.