Critical Care Recovery – a new patient support website
by Dr Pam Ramsay
Post Doctoral Research Fellow, Edinburgh Medical School
Critical Care Recovery is a website to support patients and families in and after Intensive Care. The website can be customised for your own ICU or region.
What’s the website for? This innovative website is a one-stop shop providing information, advice and support for ICU patients and their families. It’s the outcome of 10 years’ interview-based research with patients, and 5 years’ development, evaluation and quality improvement. It’s ideally placed to address a top research priority of the James Lind Alliance & ICS. To “support to help patients start living at home again”.
Is it freely available? Yes! See the “master” website at www.criticalcarerecovery.com
What’s different about it? The most striking features are its robust qualitative evidence base, and its co-design with patients. We used data from 120 research interviews to identify “what matters” to patients over their entire journey. Including Intensive Care, general ward care, the first few weeks and months after getting home, and longer-term recovery. We then worked closely with patients, family members and web developers to design a user-friendly website.
What’s on the website? It contains information and advice on Post Intensive Care Syndrome-related issues, links to other resources and support in the local area. Media includes patients’ stories, FAQs, and webcasts from patients and clinicians. A patient forum is under development. Text can be translated into over 100 languages and can be “read aloud” to increase accessibility. Patients can also store relevant information in their own secure, online library.
Has it been evaluated? Yes. Feedback was extremely positive at Royal Infirmary of Edinburgh. An overwhelming majority of patients found it very/extremely useful and easy to use.
A former patient said-
“One of the things I found really helpful…was the support links for dealing with the… issues we had to face after getting home. There’s…the emotional trauma of being in intensive care and the consequences of that…there are financial and employment issues…because you’ve been off work and will be for months. The website is very helpful in directing you to where to get support for these things”
What do patients, families and ICU staff have to say? Linked is a short video providing their perspective.
Planned roll-out across the UK-interested? Developed as part of an enhanced rehabilitation service with Edinburgh Critical Care Research Group, the website is designed to be easily “customised” according to your local patient needs e.g. according to clinical specialities, or signposting local health and social care services. We would like to spread the website UK-wide, and are developing a roll-out model to help local teams to do this with the minimum of fuss.
How much will it cost? Working together with the North London Critical Care Network, we recently applied for large-scale research funding to roll it out across the Critical Care Networks (outcome expected September/October 2017). We are already developing a social enterprise (not for profit) model if unsuccessful, in order to keep the cost of a “customised” website manageable.
How do I find out more? Please email Dr Pam Ramsay in the first instance, at firstname.lastname@example.org
Website here: www.criticalcarerecovery.com