Patient organisations and the core outcome set revolution
2Irish Neonatal Health Alliance, Ireland
3European Lung Foundation, UK
Background: This work links to the international Core Outcome Measures in Effectiveness Trials (COMET) Initiative. Core Outcome Sets (COS) can reduce research waste by promoting consistency in outcome reporting. They represent the minimum that should be measured and reported for a particular health condition. COS should be relevant to all research stakeholders, including patients and the public. Patient participation in COS development is considered crucial to ensure core outcomes are relevant to patients and other healthcare decision-makers. There has been a dramatic increase in patient participation over recent years. Once developed, COS need to be used to reduce rather than increase research waste. Patient organisations are influential in policy decisions in healthcare, and many provide research funding for clinical studies and collaborate closely with the research community in their disease area.
Objectives: • Describe how COS developers work with patient organisations in developing COS and promoting COS uptake. • Identify how patient organisations' influence could be harnessed to enhance COS uptake, normalise their use and maximise collaborations between COS developers and patient organisations.
Methods: We consulted with COS developers via a survey to explore how they worked with patient organisations in developing COS and promoting their use. Additionally, we held meetings with four key stakeholders from patient organisations to understand what they knew of COS, any previous involvement in COS and their views on how their organisation might support COS uptake.
Results: COS developers often described working with patient organisations in activities such as identifying public research partners or recruiting patient participants. However, they rarely described patient organisations changing their practice as a result of being involved in a COS project. The patient organisations interviewed expressed keen interest in COS and could see the relevance and importance of COS uptake, although some challenges were noted.
Conclusions: Whilst COS developers often turn to patient organisations for help, these partnerships could provide opportunities for promoting COS uptake. Indeed, patient organisations appear eager to hear about COS, recognising the importance of COS uptake.
Patient, public and/or healthcare consumer involvement: We worked in partnership with two patient organisations, one partner is also a patient research partner.