Dr Alison Keogh is based in Insight@UCD. She graduated as a physiotherapist in 2010 from UCD and immediately undertook a MSc in Sports and Exercise Medicine from TCD. She worked clinically for a number of years, primarily in private practice and with sports teams ranging from club to international. In 2013, she returned to UCD to begin a PhD in the area of behaviour change, looking at training physios to communicate in a manner that supports patient adherence to exercises and whether this training was effective. Since 2017 she has worked in the Insight Centre (UCD) with Brian Caulfield in the area of digital health, focusing on keeping the human in the loop by exploring unmet needs in the use of digital devices in health, and designing and implementing digital tools with patients/clinicians, including how best to do this across multiple cohorts.
Keogh is the Patient and Public Involvement and Engagement (PPIE) lead for the Mobilise-D consortium. She writes about the role below:
Patient and public involvement is critical to the success of any healthcare related project. It works from the perspective that nothing should be done ‘to’ someone without their prior involvement in that thing. In other words, it involves doing research with people rather than for them. This moves beyond including patients as participants in research studies using qualitative methods, and instead places them in seats at the table with researchers and others who are looking to develop new solutions for pervasive health issues. Without understanding patient needs and perspectives, we risk a very expensive trial and error process, whereby significant money is spent running trials and developing tools that are not important to patients, or that they don’t consider meaningful to their everyday lives. PPIE is now being considered a necessity in most grant applications and in the regulation of new healthcare tools as it is recognised that research cannot be done without a deep understanding of the topics and aspects that are important to various groups of people. These topics can include anything from how someone feels about sharing certain types of data (e.g. genomics), to what are the aspects of their lives are most affected by their condition and how.
One of the criticisms of PPIE work in the past is that it was a ‘tick the box exercise’. However, this was indicative of PPIE activities that were being undertaken in a non- meaningful way. For example, asking for the perspective of a small number of patients but only about work which had already been completed. Or taking the patient perspective into account using only interviews for which patients were participants in. Instead, meaningful PPIE work requires us to embed patient representatives into the research project by asking them to support the design, interpretation and dissemination of activities, alongside researchers. This requires significant work and resources to facilitate, but it means that the research that you create is more valuable because it reflects the opinion of those for whom the research is intended.
Mobilise-D is a IMI funded consortium consisting of over 34 partners across Europe. The consortium is working to develop validated digital mobility outcome measures of real-world walking in a number of different patient cohorts, specifically Parkinson’s Disease, Multiple Sclerosis, Chronic Obstructive Pulmonary Disease, and Proximal Femoral Fracture (hip fracture). As the PPIE lead my role is to facilitate the integration of the patient and public perspective into the work of the consortium. For example, we look to gather feedback, insights and ideas from patient representatives regarding the design of research tasks, the interpretation of results, co-authoring publications and sharing the results beyond publications (e.g. blogs, webinars, etc.). As PPIE lead I facilitate the interaction between researchers, clinicians and industry partners of the consortium, with the members of the patient and public advisory group. I ensure that PPIE is embedded within consortium activities and that the patient and public advisory group is kept informed of research progress. This involves ensuring that the structures are in place within the consortium to support this communication link and overseeing communication and interaction between the patient advisors and the research partners.
To date within Mobilise-D, our patient and public advisory group have supported us in the following ways:
– Reviewing protocols and research questions
– Co-authoring manuscripts
– Supporting interpretation and dissemination of results
– Presenting their perspectives and experiences