A website to support recovery after intensive care creates great interest for Scottish Health Care stakeholders.
Health care professionals and patients from across various sectors (NHS, Government, Higher Education, Industry and Patient Groups) gathered together to discuss a new website that has been developed to help ICU survivors along their recovery journey.
The event, hosted by Edinburgh Critical Care Research Group (NHS Lothian/University of Edinburgh), sought to engage delegates in dialogue around the impact of the website on patients and family members and how it could be rolled out across NHS Scotland.
Dr Pam Ramsay (Project Lead and Research Fellow in Nursing Studies at Edinburgh Napier University) opened the first session by describing the rationale for building a website to address the complex physical, psychological and social needs of Intensive Care survivors and their family members. She spoke of the importance of involving patients, family members, clinicians and digital experts in the website’s development. She described how the project was underpinned by robust research evidence (>100 interviews with patients) in 3 large Intensive Care studies and that the project had taken over 5 years to develop. The website has been “live” since August 2015, and the event showcased its implementation and evaluation, funded by The Health Foundation.
Neil Francis (Company Net Ltd) who helped build the website, alongside a Scottish digital company (Shaw-online.com), spoke about how the project resonated with him so deeply that he was prepared to take this project on over a long time frame and without significant financial benefit because it was the right thing to do. He described how satisfied he feels to have worked so closely with patients and family members to make the website really easy to use, particularly those not confident with using the internet.
Patients, Jon Sowerby and Bob Glen described how they had been involved in website development and invited members of the audience to ask them questions about it. They spoke of feeling valued and their experiences respected when they saw how their work and effort in focus group discussions had been reflected within the completed website.
The project team wanted our experiences to inform their work, it was clear that they valued our opinions and feelings about how we could shape the website to make it really useful for patients and families
Dr Eddie Donaghy (University of Edinburgh and project team member) further highlighted the essential role of patients and families in developing and refining the website, including recent improvements to make it more interactive.
Professor Tim Walsh (Critical Care, University of Edinburgh) ended the event by encouraging conversation around how the project could move into a further stage by securing funding from the Health Foundation to spread the use of the website throughout each of the Intensive Care Units in Scotland. This encouraged much stimulating and enthusiastic discussion, with several stakeholders expressing an interest in future collaboration.
Watch this space!
Please view the website here: http://criticalcarerecovery.com/
To read more about the research which powered the website, visit the links below.
1. Ramsay, P (2010). Quality of life following prolonged critical illness: a mixed methods study. Unpublished PhD thesis, University of Edinburgh.
2. Walsh TS, Salisbury LG, Boyd J, Ramsay P, Merriweather J, Huby G, Forbes J, Rattray JE, Griffith DM, Mackenzie S, Hull A, Lewis S, Murray GD. A randomised controlled trial evaluating a rehabilitation complex intervention for patients following intensive care discharge: the RECOVER study. BMJ Open 2012;2:e001475 doi:10.1136/bmjopen-2012-001475
3. Ramsay P, Salisbury LG, Merriweather JL, Huby G, Rattray JE, Hull AM, Brett SJ, Mackenzie SJ, Murray GD, Forbes JF, Walsh TS. A rehabilitation intervention to promote physical recovery following intensive care: a detailed description of construct development, rationale and content together with proposed taxonomy to capture processes in a randomised controlled trial. Trials 2014; 15:38.
4. Walsh TS, Salisbury LG, Merriweather JL, et al. Increased Hospital-Based Physical Rehabilitation and Information Provision After Intensive Care Unit Discharge: The RECOVER Randomized Clinical Trial. JAMA Internal Medicine 2015; 175(6):901-10.
5. Ramsay P, Huby G, Merriweather JL et al (2016) Patient and carer experience of hospital-based rehabilitation from intensive care to hospital discharge: mixed methods process evaluation of the RECOVER randomised clinical trial. BMJ Open 2016;6:e012041 doi:10.1136/bmjopen-2016-012041.
6. Ramsay P, Huby G, Rattray J, et al. A longitudinal qualitative exploration of healthcare and informal support needs among survivors of critical illness: the RELINQUISH protocol. BMJ Open 2012; 2(4).