Why is developing a patient registry such a daunting task?
I had lunch with a dear friend recently. It was one of those meals where everything is tiny, beautiful and surprises at every mouthful. My friend is the purest scientist I know and also a foodie, which I don’t believe is a coincidence. She thinks about the detail of things and about the value of capturing the data of life, whether it is to finesse her cooking or improve patient care. As we talked we discovered a frustration in common. In recent encounters with the Irish health service, we had both been lamenting the fact that patient data is captured in paper records. As soon as the clinician’s pen commits the rich information to paper, it is dead to any attempt to pool it with the data of other patients. Barring some very committed researcher finding the time to trawl through paper records, any nuggets of data, that could improve the care of other patients, are lost.
One of the most valuable approaches to capturing patient data to improve care is through patient registries. Registries can tell us how many patients there are with a particular condition, what healthcare centres they attend, how they progress over time, how they respond to treatments and can be a tool to answer any number of research questions. The value of registries is consistently talked about by the health research community but, unfortunately, it is rare for the talk to translate into a live registry and only a tiny percentage of Irish patients have the opportunity to be part of one. Patient organisations and other groups understand the enormous value of registries but developing a registry can seem like an unsurmountable task. I’ve thought a lot about why this might be and suspect it is down to multiple factors, including, a lack of funding and the fact that healthcare professionals, who are central stakeholders in most registries, are under enormous pressure to meet the persistent demands of patient care, leaving little time for anything else.
I believe there is another reason too. Unless you have a job in which you are immersed in their management, patient registries are a very complex thing to get to grips with. Involvement in them requires you to have some familiarity with IT platforms, data management, disease classification, data protection, patient consent and, on top of all that, to be able to source on-going registry funding. To those with many demands on their time, the challenges of navigating these complexities can mean that registry development is always a little out of reach.
With this in mind, the MRCG recently organised a workshop on the practical elements of developing a registry. Our generous speakers shared their top tips on things to consider on all aspects of developing a registry. It was clear that the audience of medical research charities and other guests were hungry for this very practical guidance. There were many present who work in registries on a daily basis and yet had not met each other before – surprising in our small island of natural networkers.
What emerged perhaps most strongly was a need for more collaboration in the area of registries. As proposed by Godfrey Fletcher, CEO of the Cystic Fibrosis Registry of Ireland, it might be time for a trusted third party, which could take the form of a National Federation of Registries. If such a Federation was appropriately resourced, it could provide the much-needed intellectual leadership around registries and facilitate the sharing of registry resources. The sharing and support that it would enable might just make the previously unsurmountable task of developing new registries, surmountable. Now that’s food for thought.
Dr Avril Kennan, CEO, MRCG
A practical guide to developing a patient registry was published by the MRCG in September 2018.
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