PPIE is a critical aspect of ECSG’s research. We learn so much from the needs and experiences of patients, their relatives, carers, and others close to them, and from public groups.
In this context, Involvement relates to activities that take place ‘with’ and ‘by’ contributors (rather than ‘to’, ‘about’ and ‘for’ them). Engagement is where we use multiple, creative ways to make sure that people know about our research. We connect with them, listening to their responses, questions and ideas, and enter into a conversation to improve the research process and our findings, which will ultimately lead to improvements in care.
Much of ECSG’s research is based on the use of routinely collected health data (medical records), biological samples and national repositories. We also talk directly to patients, relatives/carers and clinicians about the issues that affect their lives. This is used in our research to improve clinical care and patients’ lives. It is important that patients, and those close to them, should have the opportunity to determine, as stakeholders, how their data are used. Our approach is also intended to promote public understanding of our work and to build future research capacity.
In ECSG we embrace PPIE, as is evidenced by the large, established Patient Partnership within our group, which contains thousands of people with cancer. We routinely communicate our findings and invite patients to work with us in partnership, as part of our broader PPIE activities.
York Haematology Support Group was set up in 2009 by Carol Miller, a blood cancer survivor living in York. It offers the opportunity for patients, family members and friends affected by blood cancer or related disorders to get together in an informal setting, to chat about their experiences and support one another. It is an active group, generally attended by around 20-30 people, including a guest speaker who may be a researcher, haematology doctor or nurse, or someone involved in broader support services.