Sustainability is the new catchall phrase, yet when it comes to initiatives like PARADIGM, we cannot afford to offer empty promises. Sustainability is an essential element of success.  If patient engagement is to truly deliver, it must become systematic, especially as the positive outcomes of patient engagement will be experienced over long periods of time, across a very broad scope of R&D programmes.  

The operational disadvantage is that it is difficult to find sources of funding to span lengthy time periods, and initiatives may lose political, industry and community support over time.  Yet, patient engagement activities need time to reach a level of maturity to allow benefits to accrue. So, we must find a way to build in sustainability if our efforts are to translate into true outcomes for patients and society as a whole.

Furthermore, we need to gain an appreciation of the factors that promote long-term sustainability.  It is all about maintaining the benefits of the initiative over time by determining the structures and processes that will enable the leveraging of resources.  These resources are needed to implement, update and maintain these efforts. Sustainability capacity must be built into PARADIGM.

So, how do we do this?  In order to get us headed in the right direction, an analysis of sustainability models was performed. This was done by conducting a series of interviews, in addition to desk research. In the interest of gaining a broad understanding of potential methods, the assessment was carried out across a number of domains including patient/civil society, medical/drug discovery and development, education, social entrepreneurship, and non-profit organisations.

Important factors for promoting sustainability were found across this diverse group of organizational programming.  Additionally, these common themes were categorised according to three dimensions: culture, processes and resources.

Some key components identified to date include:

  • Culture:  trust building, open communication, flexibility and agility
  • Process: transparency, a supportive legal framework, the development of sound metrics to assess value, keeping consistency with vision and mission, solid governance
  • Resource: the need for diverse sources of funding to ensure financial independence, the importance of fair compensation to participants

The learnings from this benchmarking exercise will inform the choice for the most appropriate model to sustain patient engagement.  A workshop held in 2018 generated many ideas around patient engagement sustainability which will be further refined and integrated with stakeholders’ expectations.  Additional sources of input included results from interviews with consortium members and outputs from groups working within PARADIGM.

In 2019, a second workshop exploring the strengths and weaknesses of ideas produced to date is expected to enable the selection of the most appropriate sustainability model, along with a few potential variants.  These insights will form the basis for an expanded dialogue on sustainability which will be accomplished through additional interviews and an open consultation process. This iterative process will be used to triangulate the insights from these various efforts in order to foster co-creation and find a workable sustainability model.  We want to ensure the outputs from PARADIGM address the mesmerising complexities and challenges of today, as well as remaining fit for the future.