Dr Pam Ramsay talks about criticalcarerecovery.com an award-winning website supporting patients recovering after a spell in ICU
The former intensive care nurse and researcher has been the driving force behind an online resource to support intensive care patients and their families. She was recently awarded the Digital Impact Award at the Holyrood Connect Digital Health and Care Awards, supported by InterSystems. Here she explains how the website has developed.
Dr Pam Ramsay is a researcher at Edinburgh Napier University. She started her academic career as an Intensive Care nurse, but had a real passion for understanding and improving recovery among intensive care patients. This led to the development of criticalcarerecovery.com; a website to support Intensive Care Unit (ICU) patients and their families. It has been scaled up to a small number of ICUs in Scotland and viewed by more than 20,000 people since going live two years ago.
In March, Dr Ramsay won the Digital Impact Award at the Holyrood Connect Digital Health and Care Awards 2019 for her work on the website. InterSystems sponsored the award and caught up with her about her research and her ambitions for criticalcarerecovery.com.
Q: Can you tell us about your background – and how you became interested in intensive care recovery?
A: “I’d worked for many years as a staff nurse in Intensive Care at the Royal Infirmary. I then became a research nurse, but I realised after a few years that I really wanted to do my own research, on what it’s like to be a patient in Intensive Care. So, I did my PhD on quality of life in long-term patients. I then got two post-Doctorate fellowships, and these allowed me to do a programme of interview-based research with patients and families on their recovery after Intensive Care…and that was the basis of the website”
Q: What kind of physical issues do patients have after Intensive Care?
A: “Patients can suffer from a common set of issues, regardless of what brought them into ICU. Patients can lose muscle mass for every day they spend in ICU, they can suffer joint pain and stiffness, weakness and fatigue, pins and needles…all of these things make getting back to work really difficult which, in turn can lead to money worries. We want patients to know what they can expect during recovery and more importantly, to know where they can get help, so that they’re better able to deal with the knock-on effects”
Q: What kind of psychological issues do patients have after Intensive Care?
A: “It’s very common for patients not to remember how they ended up in ICU, or what happened while they were there…and it’s really common to have really strange dreams. These things can create high levels of anxiety and depression, and some patients experience symptoms of post-traumatic stress, such as flashbacks. Patients often don’t talk about the dreams or the flashbacks, because they can be disturbing. However, they are very common, and just finding that out can be very reassuring.”
Q: When did the idea for the website start to take shape?
A: “In one of my studies, I interviewed patients at four points during the year after they’d been in ICU. I wanted to know more about the issues they faced and the help they needed. I wanted to know whether and how their needs changed over time.
I looked at what kind of support was available to them and found that there wasn’t much out there. The idea of the website came up around 2012. We wanted to create something that would answer some of the questions that patients had, so we sat down with patients and their families to create a website that really would work for them.”
Q: Are there particular challenges in designing a tech resource for these patients?
A: “There are lots of reasons why patients might not want to…or not be able to use a website. Many patients struggle with concentration after ICU, they can tire easily, they might feel anxious…also this patient group are often older, so they might lack confidence with IT. We had to make sure that the website was as user friendly as possible…and the best people to tell us how to do that was patients themselves.
“We designed and developed the website together with patients, family members, researchers and web developers, through a series of focus groups with intensive feedback. We continually refined the website, based on what patients and family members told us. We wanted to make sure the website was welcoming, easy to navigate, and that the language was right. In the end, the patients themselves identified four main themes: How do I find out what happened in Intensive Care; What sort of help will I get?; What can I do to help myself?, and What can my family do to help me?
Q: What kind of response has there been to the site?
A: “The site went live in August 2015. It was launched and evaluated at the Royal Infirmary, and we then secured research funding to localise it for other Intensive Care Units across Scotland. Google Analytics tells us that about 10,000 new patients are using it every year…which is great.
We’re working with a relatively small patient population, so it shows that there is clearly a need. However, it is frustrating that we have really struggled to secure long-term funding. We have been exploring options, such as creating a social enterprise (not for profit), but I’d ideally like the NHS to take this on and help us develop it. That’s the main reason we entered these awards-to raise awareness of the website and find people to help us take it forward.”
Q: What kind of developments would you like to make to the site?
A: “We would like to add several new features, such as more specific information on the various reasons that people come into ICU, whether it’s heart surgery, a head injury or the like. There’s a real impetus in health and social care to provide more personalised support and we want to be at the forefront of that.
“I recently secured some research funding, with colleagues in NHS Tayside, to try out a “virtual” follow-up clinic for patients who’ve been in Intensive Care. The traditional clinic system is dependent on people being able to get to a specific place at a specific time, but our patients are not always physically or psychologically able to do that.
“So, we’re going to use Attend Anywhere – a secure, online video consultation platform (a bit like Skype, but secure and NHS approved) to host the clinic appointments remotely. This means that patients can see and speak with an expert, from the comfort of their own home. If that proves useful, we can embed it into the website. That way, patients can be directed to resources on the website at the same time.”
Q: It sounds as if you have a lot of ideas: why are you so keen to see criticalcarerecovery.com develop further?
A: “We know that 25% of patients end up back in hospital within three months of getting home after an ICU stay. Shockingly, that figure rises to 40% within six months, so there’s a real need to support these patients during their recovery and avoid unnecessary readmissions to hospital. Digital interventions have been shown to reduce readmission rates and healthcare costs in other patient groups, and we’d hope to demonstrate similar benefits in later work.”