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.<\/p>\n
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>; 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.<\/p>\n In March, Dr Ramsay won the Digital Impact Award at the Holyrood Connect Digital Health and Care Awards 2019<\/a> for her work on the website. InterSystems sponsored the award and caught up with her about her research and her ambitions for criticalcarerecovery.com.<\/p>\n A: <\/strong>\u201cI\u2019d 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\u2019s 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\u2026and that was the basis of the website\u201d<\/p>\n A: <\/strong>\u201cPatients 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\u2026all 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\u2019re better able to deal with the knock-on effects\u201d<\/p>\n A: <\/strong>\u201cIt\u2019s very common for patients not to remember how they ended up in ICU, or what happened while they were there\u2026and it\u2019s 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\u2019t 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.\u201d<\/p>\n A: <\/strong>\u201cIn one of my studies, I interviewed patients at four points during the year after they\u2019d 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.<\/p>\n I looked at what kind of support was available to them and found that there wasn\u2019t 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.\u201d<\/p>\n A: <\/strong>\u201cThere are lots of reasons why patients might not want to\u2026or not be able to use a website. Many patients struggle with concentration after ICU, they can tire easily, they might feel anxious\u2026also 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\u2026and the best people to tell us how to do that was patients themselves.<\/p>\n \u201cWe 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?<\/p>\n A: \u201c<\/strong>The site went live in August 2015<\/a>. 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\u2026which is great.<\/p>\n We\u2019re 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\u2019d ideally like the NHS to take this on and help us develop it. That\u2019s the main reason we entered these awards-to raise awareness of the website and find people to help us take it forward.\u201d<\/p>\n A: \u201c<\/strong>We would like to add several new features, such as more specific information on the various reasons that people come into ICU, whether it\u2019s heart surgery, a head injury or the like. There\u2019s a real impetus in health and social care to provide more personalised support and we want to be at the forefront of that.<\/p>\n \u201cI recently secured some research funding, with colleagues in NHS Tayside, to try out a \u201cvirtual\u201d follow-up clinic for patients who\u2019ve 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.<\/p>\n \u201cSo, we\u2019re going to use Attend Anywhere \u2013 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.\u201d<\/p>\n A: \u201c<\/strong>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\u2019s 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\u2019d hope to demonstrate similar benefits in later work.\u201d<\/p>\n For more information about the Critical Care Recovery website, see <\/em>www.criticalcarerecovery.com<\/em><\/a> or contact Dr Ramsay at <\/em>p.ramsay@napier.ac.uk<\/em><\/a><\/p>\n","protected":false},"excerpt":{"rendered":" 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 […]<\/p>\n","protected":false},"author":53,"featured_media":1035,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"spay_email":""},"categories":[8],"tags":[],"jetpack_featured_media_url":"https:\/\/ec-projects.co.uk\/intersystems-uki\/wp-content\/uploads\/2019\/07\/pam-ramsey.jpg","yoast_head":"\nQ: Can you tell us about your background \u2013 and how you became interested in intensive care recovery? <\/h6>\n
Q: What kind of physical issues do patients have after Intensive Care? <\/h6>\n
Q: What kind of psychological issues do patients have after Intensive Care? <\/h6>\n
Q: When did the idea for the website start to take shape? <\/h6>\n
Q: Are there particular challenges in designing a tech resource for these patients? <\/h6>\n
Q: What kind of response has there been to the site? <\/h6>\n
Q: What kind of developments would you like to make to the site? <\/h6>\n
Q: It sounds as if you have a lot of ideas: why are you so keen to see criticalcarerecovery.com develop further? <\/h6>\n