The importance of collaboration and alignment and why it takes a village to achieve meaningful patient engagement (PE) was the opening call to action at the recent Patient Engagement Open Forum – Delivering patient engagement beyond aspirations. Over 250 delegates participated in the two-day immersive event which took place in Brussels, Belgium on 18–19 September 2019.

Organised by PARADIGM, PFMD and EUPATI, the Forum provided an overview and update on patient engagement (PE) players and efforts across the globe but also incorporated a series of hands-on workshops with tangible outputs. The delegates at the PE Forum were not just passive recipients of information but active partners in co-creating the next tools for implementation of PE. 

[Read on for discussion highlights from the event or download a more detailed report here]

During the inaugural panel session with national and EU Health Technology Agencies (HTAs) and regulators, delegates asked whether it was time for PE to be a mandatory component of regulatory dossiers. Delegates also believed that patients with experiential knowledge should be considered essential as experts, in the same way as other experts such as clinicians were considered essential. Until this happens, PE would be seen as an extra effort. As one delegate noted, even if not ready to mandate PE, HTA and regulators should make a clear position statement that they support and expect PE. 

Four parallel interactive workshops on Day 1 focused on different aspects of PE. In the session on the practical implementation of good PE practice in everyday work, having a framework for PE and a shared purpose were identified as key as was strong internal leadership and support for PE. These and other insights will be carried forward into PFMD workstreams and pilots of PFMD’s PE Quality Guidance. In another session on legal contracts between patients, pharma and researchers, participants had to evaluate a PE activity contract for a patient advocate from both a patient perspective and a pharma perspective. Key points from the lively discussion will feed into the development of reference or template contracts. 

The final parallel session in Brussels was a two-part effort to prioritise gaps in PE and identify where PARADIGM could achieve most benefit (part 1; day 1) and then to co-create future PE tools to address identified gaps (part 2; day 2). Key points were to conduct a comprehensive landscape check to ensure that perceived gaps were real before embarking on potentially replicative initiatives, to communicate process and outcomes and improve reporting and documentation of PE practice. 

In a genuine spirit of inclusivity, the PE Open Forum also incorporated an on-line parallel session to brainstorm how to reach beyond the ‘easy targets’ in PE. There was a clear call for commitment to, and support for, PE from the organisation’s leadership – echoing responses from other sessions – and participants also highlighted a need to ‘think big and act small’. The feedback will be used to help develop and refine patient and industry tools for PE activities and will ensure that efforts are aligned with identified needs for integrating PE in more challenging areas.

Morning workshops on Day 2 of the Forum built on the delegates as ‘partners in co-creation’ approach. There were parallel sessions on compensation and fair market value (FMV), metrics for determining the value of PE, and a continuation of the gap workshop to deliver consensus on what the next tools for PE should be. Discussions around FMV reflected the complexity and sensitivity of this topic which is the focus of the multi-stakeholder project ‘Reasonable agreements between patient advocates and pharmaceutical companies’ – an initiative led by WECAN in collaboration with PFMD. Participants’ input led to refinement and addition of patient roles in PE activities for FMV consideration and identification of key barriers that would need to be addressed. An overarching consensus from participants was to minimize complexity and keep suggested solutions simple. 

Over 100 Forum participants weighed in on the discussion around metrics and two clear camps emerged. Some believed existing efforts were too complicated which would be a barrier to implementation, while others valued the more comprehensive approach to ensure that metrics could be optimally combined for tailored use in diverse situations. However, there was wide agreement that measures of less ‘numerical’ outputs such as trust and motivation were very valuable though hard to quantify. Feedback from this workshop will be incorporated into PARADIGM’s Work Package on metrics.

Participants in the session ‘Creating future PE tools’ took learnings from the previous day’s session forward into four taskforce groups. These focused on (1) defining criteria and process for PE, (2) reporting and dissemination of results from PE activity, (3) creating and sustaining long-term relationships with stakeholders and (4) fostering co-creation and collaboration. Each task force has identified priority activities that will feed into the next iteration of PE tools being developed across partner organizations.

Maya Zlatanova, co-founder and Chief Executive Officer of FindMeCure, spoke passionately about the ‘postcode lottery of clinical trials’ and the motivation for the development of the FindMeCure online platform. It offers an intuitive search tool that helps patients find trials relevant to their condition and considers factors such as age and location. Future developments for the platform included incorporating real-time data aggregation to predict recruitment onto clinical trials. 

The final plenary session of the PE Open Forum brought together the issues and themes covered in the two-day co-creation event and the progress towards building a global PE framework. There was a continued commitment from all organisations and a call to participants to be the ‘village’ and foster an environment and culture that allows PE to happen.