English language survey results

Chi Pakarinen, Daphnee Pushparajah, Paula Decola, Magda Chlebus, and Suzanne Ii     

Patient engagement in the medicine R & D process is largely underutilized, despite the benefits of co-creation in delivering health solutions that meet patients’ defined needs and improve health outcomes.  There is a lack of consistent, systematic and sustainable metrics that reflect different stakeholders’ perspectives on process, outcomes and return on engagement measures. Unfortunately, prior initiatives in this area have not routinely included underrepresented groups such as young people, people with dementia and unaffiliated patients, along with a broad group of diverse stakeholders in the co-creation of workable solutions.  

To set a baseline for its work, PARADIGM conducted a survey in June-July 2018 to identify the expectations, needs and aspirations of stakeholders towards patient engagement. In addition to this survey, consultations with specific stakeholder groups were held in order to make giving input to the topics of the survey more accessible.

  • The survey was co-designed by consortium members building upon their expertise and experience from other similar initiatives (such as PFMD, DIA, and CTTI).
  • It consisted of 15 questions applicable to all stakeholders, as well as a set of unique questions directed at specific stakeholders i.e., regulators, industry, HCP and the patient community. The English-language survey was administered using SurveyGizmo and was in the field for approximately 9 weeks.
  • It was disseminated to a wide range of stakeholders who are part of PARADIGM members’ networks across Europe and globally.
  • The English survey was also translated into 23 other European languages and these responses were analysed separately.


The highlights of the English responses are presented here. The full report will soon be found on the PARADIGM website. The analysis of the 372  responses revealed that the two biggest groups self-identified as members of the Biotechnology/ Pharmaceutical/ Medical Technology industry (34.95%) and Patient advocates and organisation (35.8%).

Respondents’ location: Those answering the English language survey were located in 43 countries and five continents.  Almost half of the responses were from people in the United Kingdom (28.2%) and United States (16.9%). Germany, Belgium and Switzerland each had about the same percentage of responses, approximately 5.6%. The other responses (32.8%) came from people residing in the remaining 38 countries.

Top resources needed for Patient Engagement:

The responses indicate that the top areas of need to have effective patient engagement are:

  • Impact measures (73.1%)
  • Methods, materials and information on how to do more effective patient engagement (50.3%)
  • Methods to identify and evaluate where patient contributions would be most valuable (49.2%)
  • Methods, materials and information on best patient engagement practices (47.6%)

These findings align with PARADIGM’s ongoing assumptions and the main areas of focus within the project.

Patient preparedness to engage: A total of 264 patient organisations/patients noted their perceived level of preparedness and need for support for a number of areas including internal processes; knowledge; human resources; financial resources and managing competing interests. The majority of respondents indicated that while they were prepared, they still needed some support for most categories. The exception was financial resources, where the majority noted that they were not prepared and they needed support.

Next steps:

  • A Delphi process will be employed to gain a more robust sense of patient engagement needs and aspirations from the various stakeholder groups.   
  • The results will support the co-creation of a suite of tools, guidance and recommendations to enable a more effective, ethical and sustainable patient engagement framework for all stakeholders.

Take home message

  • Our initial findings confirm that PARADIGM’s focus on co-creation of impact measures, tools, guidance and sustainability remain areas of need across stakeholder groups.
  • The findings suggest that PARADIGM aims and outputs can potentially be game-changing for stakeholders across geographies.
  • There is substantial interest in carrying out effective and sustainable patient engagement.

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