March 2024: A public contributor's take on driving progress in healthcare. Karen Mooney | Patient and Public Involvement Lay LeadI understand the need to urge progress in health research, so my initial take on the Driver Programme was about that journey, travelling forward. But for every journey, you need to know where you want to go, be able to finance it, have the authority to travel, be covered by insurance, determine your route, and hopefully have good travel companions.For the Inflammation and Immunity Driver Programme, clear objectives, financed through Health Data Research UK, have set the destination: “…better understand the fundamental mechanisms of inflammation and immunity to deliver key insights and improve patient care for those affected by inflammation-mediated diseases.” It is one of five programmes designed to “enhance and assemble national scale research-ready data assets, creating data foundations that will enable discoveries using data across the whole population of the UK.” Karen Mooney PPI Lay Lead To me, the passport/visa/licence could be the authority to access existing large datasets. However, like literal travel, accessing such information is not always as straightforward as you think. There doesn’t appear to be a common application process, and costs can be prohibitive. If only one embassy, consulate or ministry for health data information existed!From a patient perspective, this seems like a huge roadblock. You know, those where they lay the cones weeks before any work is carried out, causing disruption, re-routing, delays, and frustration. Many assume that data collected via our engagement with the NHS can be routinely accessed for research so long as our privacy is not breached. Frustratingly, this is not the case for progress and research, and one wonders, given its value, when our government will formally align the health data collection, protection and standardisation across all four nations.Insurance on this project is provided through skilled project management, regular check-ins with our funders and experienced Programme Directors and Leads. They, in partnership with many good travelling companions within this growing team, determine the ‘route’, creating stepping stones, bridges and networks, building capacity around structure knowledge, ultimately enabling the learning by doing of next-generation navigators.Opening up new routes is never easy; it can take a lot of time from planning to ground works to the highway, but I look forward to the journey, and on behalf of patients and the public, I promise to ask regularly, “Are we there yet?”LinksFind out more about Health Data Research UKNotesThis page was first published on 28/03/2024 This article was published on 2024-03-28
