It came as no surprise that our interviewees valued the partnerships they hold with the pharmaceutical and devices industry. Yet, they urged patient organisations and industry to always strive for long-term relationships built on deep foundations supported by mutual areas of interest for patient benefit. Greater investment by industry in advocacy driven roles has helped to support this drive.

Patient groups are keen to embark upon truly collaborative projects that meet both their needs and the needs of industry. They see value in setting out on a journey together, with shared and agreed goals, and building a lasting mutually beneficial partnership that achieves a vision that ultimately meets the needs of patients.

It is important to consider exactly how relationships and projects are handled over time, in particular in the case of patient groups and industry personnel changes. Relationships between patient groups and industry should be viewed as key organisational partnerships supporting ambitions for patients, therefore worthy of careful consideration, open and clear communication, and some consistency process wise.

Planning for longevity to support patient groups doesn’t have to mean endless funding but it is prudent to consider transitional approaches to funding. If patient-centricity is a central tenet of any organisation, then ongoing interest and relationship management with engaged patient groups should be attended to, even if funding reduces or stops.