Health and Care Research Wales (HCRW) hosted their first ever digital conference on 7 October 2020, centred around the theme ‘Making a difference: the impact of health and care research’. As part of the event, the team behind the DOMINO HD study (Multi Domain lifestyle targets for improving prognosis in Huntington’s disease) received the highly commended Public and Patient Involvement (PPI) award for their presentation.
Professor Monica Busse along with DOMINO team members Dr Cheney Drew and Dr Philippa Morgan-Jones and PPI representative Barry Mackintosh entered a virtual presentation titled ‘DOMINO HD: An example of successful, cross-cultural engagement with public and patient representatives to design a multi-national observational study.’
The presentation outlined how PPI was incorporated into all aspects of their research into Huntington’s Disease (HD), a neurodegenerative disorder for which there is currently no cure or effective treatment. However, there is growing evidence that environmental and genetic factors may have a part to play in determining the course of disease progression.
DOMINO-HD is a consortium study consisting of six European partners; the UK, Ireland, Spain, Switzerland, Germany and Poland. The overarching aim of the study is to identify the key environmental factors that may be responsive in targeted interventions with a view towards optimising disease management for individuals with HD. The study has 3 main parts; development of a digital platform and implementation framework involving the development of methods for collecting information about lifestyle factors; using remote monitoring technologies to measure aspects of lifestyle and; validation of commercially available monitoring technologies for measuring lifestyle factors in people with HD.
The project involves a twelve month observational study to investigate the interplay of lifestyle and genetic factors on HD symptom progression. This will take place across the five clinical sites in Europe, involving the recruitment of around four hundred and fifty participants. The team will collect data on disease symptoms, nutrition, physical activity, sleep and genetics at baseline and 12 months. Additionally, there will be continuous collection of data on physical activity and sleep across the cohort using Fitbit devices for the 12 months. All the information gathered will be used for predictive modelling of disease outcomes, the aim of which is to inform the design and development of a cross cultural, data and theory driven lifestyle intervention, aimed at improving the quality of life of people with HD. The intention is that this intervention will be co-designed with significant input from PPI representatives.
All this work is underpinned by public and patient involvement. The initial study concept was supported by input from a number of stakeholder events and PPI activities focusing on lifestyle and physical activity of people with HD; in partnership with the HD involving people group and BRAIN Involve. In long term studies of people with challenging conditions, particularly when asking participants to engage with unfamiliar technologies, successful delivery of the study is dependent on participant centric design, therefore this was a key focus from the outset.
Dr Cheney Drew said “As a team we are delighted with the recognition of the successful incorporation of PPI in DOMINO-HD, particularly for our PPI representatives who’s enthusiasm for the research and dedication to the study have made a significant contribution to the ongoing delivery of the project”
The multinational nature of the study requires cross cultural PPI input to ensure the relevance of the study in each partner country. As a result, a model was implemented featuring representatives from all five countries, acting as a conduit between the main research team and the wider PPI network within their own locale. This has helped to facilitate equal opportunities for involvement across all partner countries.
In an initial meeting, the team laid out their expectations of the PPI role which gave them an opportunity to identify any further training and support required for their representatives. This promoted confident and helpful input from the representatives, which proved pivotal in the co-development of participant friendly materials for gathering wider public and patient input.
One of the local representatives, Barry Mackintosh, provided his perspective as part of the presentation for HCRW. Barry said “I have been pleased and impressed by the efforts made by the project to include and engage with HD patients and family members. I know that our input has informed team decisions.”
To find out more about this study please visit the DOMINO-HD webpages here.