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Developing a Care Opinion research community

By Professor Rebecca Lawton – Director of the NIHR Yorkshire and Humber PSTRC

The experiences of patients are increasingly being sought by health and social care organisations and, perhaps less frequently, used to make improvements.

These experiences come in different forms – as ratings on questionnaire items, informal feedback sought by staff or stories volunteered by patients and their families. Care Opinion provides an opportunity for the latter. This not-for-profit organisation provides a platform for unsolicited stories, reflecting both positive and negative experiences of care that are written and directed to the organisations providing that care.

This interest in the views and experiences of patients and families, and opportunities for their involvement in their care, has also been the subject of a growing number of research studies over the last decade, with broad categories of work including shared decision making, participatory forms of design such as experience based co-design, patient reported process and outcome measures.

In a new endeavour, the NIHR Yorkshire and Humber Patient Safety Translational Research Centre is collaborating with Care Opinion to bring these two agendas together, to create new opportunities for patients and carers to be involved in research.

In 2019 we asked over 500 people who had written a story on Care Opinion whether, in principle, they would consider volunteering to be part of a “research community”.

Of the 163 people who responded to this survey, the majority were very positive about being involved in research. Nearly all respondents felt that healthcare research was important (99%). They also agreed or strongly agreed (96%) that taking part in healthcare research improves healthcare and that Care Opinion authors may have experiences that would help research (96% agree or strongly agree).

Care Opinion authors also had some opinions on how they should be involved. They expressed a wish to be able to opt in or out of being asked to help (96%) and that they should be able to see the type of organisation they are being asked to work with, before deciding (97%). Knowing about the expected time commitment (90%) and knowing how their information is safeguarded 76%) was also important to respondents.

Using this information Care Opinion, with support from Yorkshire and Humber PSTRC, has enhanced its online platform so that story authors can be invited to join the research community and state their preferences for the kinds of involvement they would want.

Our plan for the next few months is to test this out with a small number of studies within the PSTRC which are currently recruiting patients as participants. We will continue to develop the system and once we are confident that patients and researchers are happy with the way things are working, we will begin to share this opportunity with other research groups who might also find it valuable.

Of course, there will be many discussions and perhaps some glitches along the way and this approach to participating in research won’t suit everyone. There will also be questions, as yet unanswered, about the representativeness of the research community on certain characteristics such as education, socio-economic status, age, gender and ethnicity. We will need to learn and share as we go along.

We are very excited about this new and open approach to widening research participation – and learning how we can offer people who have already shared online feedback additional ways to help improve health and social care services through research.


Patient Safety and COVID-19 – the importance of NIHR PSTRCs

Since 2012, the NIHR has supported research into patient safety through funding Patient Safety Translational Research Centres (PSTRCs). There are now three centres: Greater Manchester PSTRC, Imperial PSTRC and Yorkshire and Humber PSTRC. These centres operate as partnerships between a host NHS organisation and affiliated universities.

COVID-19 has brought to the fore the significance of patient safety like never before. Behavioural science has underpinned many of the most challenging safety concerns that have emerged during this time. This includes the effort to encourage the general public to follow government guidelines on physical distancing, the importance of staff wellbeing along with infection control in hospital. Understanding why people do what they do and promoting changes in behaviour are prominent features across the PSTRCs’ work.

The PSTRCs are dedicated to improving patient safety across specific areas of the NHS and social care. The centres are designed to be agile and responsive to emerging research priorities, focusing on applying novel approaches to unsolved questions. The PSTRCs proactively involve patients, gathering their experiences before creating interventions to improve specific patient safety concerns. New safety initiatives developed by PSTRCs are then tested or piloted in the appropriate healthcare setting such as a hospital, GP practice, care home or pharmacy.

The centres’ role in responding to the COVID-19 pandemic focuses on adapting existing work and building upon it to address some of the challenges facing the NHS. In addition, new research has been launched to understand and support the response to COVID-19.

An example from the Greater Manchester PSTRC is the launch of a study that looks at the mental health of survivors of COVID-19 as well as the general population within Greater Manchester including those with lived experience of homelessness. Another example is the roll out nationally of a digital triage system for use by GPs which had been previously designed by researchers within the Safety Informatics team based at the Greater Manchester centre.

Yorkshire and Humber PSTRC is exploring how healthcare organisations, such as hospitals and community pharmacies, have adapted operations to respond safely to the COVID-19 threat. It is also exploring the emotional support needs of healthcare staff and researching the impact of COVID-19 on people’s decisions to seek emergency healthcare.

Imperial PSTRC is assisting the WHO with guidance on medication safety during the pandemic and has launched a study looking at the impact of COVID-19 on digital technology in primary care. In addition, the centre is supporting the REal-time Assessment of Community Transmission (REACT) study, a national, Imperial-led programme investigating Covid-19 prevalence and the use of home testing.

The centres also recognise that this is a critical time for increasing the amount of research undertaken to support the NHS. Examples of this are developing online learning opportunities for those working in healthcare, online support communities and resources, and creating virtual research communities to allow work to continue even when face to face research isn’t possible.

The centres each focus work across specific themes* which span behavioural science, mental health, patients and carers, medication safety, transitions of care between healthcare settings, and digital interventions including designing dashboards and Artificial Intelligence. These themes are well placed to address the impact of COVID-19 on the wellbeing of the workforce, the resilience of specific areas of healthcare, the role patients and carers are playing in patient safety at this time, and access to healthcare by specific groups of patients such as those with lived experience of homelessness.

 

Read more about the work of Yorkshire and Humber PSTRC in this blog from the Centre Director, Professor Rebecca Lawton and Centre Manager Dr Beth Fylan –

https://yhpstrc.org/the-role-of-translational-patient-safety-research-during-the-covid-19-crisis/

 

Find out how the Imperial PSTRC involves people in its research, and how the Centre is adapting its involvement and engagement activities during COVID-19 in this blog: https://wwwf.imperial.ac.uk/blog/ighi/2020/05/20/its-people-who-shape-our-research-heres-how/

To learn more about the work of the Greater Manchester PSTRC during the COVID-19 pandemic read Centre Director Professor Stephen Campbell’s thoughts in his latest blog:

https://gmpstrc.wordpress.com/2020/06/03/the-role-of-translational-patient-safety-research-during-and-after-the-covid-19-crisis/

 

For more information on the PSTRCs please visit:

Great Manchester PSTRC http://www.patientsafety.manchester.ac.uk/

@PSTRC_GM

Yorkshire & Humber PSTRC https://yhpstrc.org/

@YH_PSTRC

Imperial – https://www.imperial.ac.uk/patient-safety-translational-research-centre/

@Imperial_PSTRC

 

Research themes:

 

GM PSTRC – Safety Informatics, Medication Safety, Marginalised groups (including two sub themes, Mental Health and Patients and Carers), Safer Care systems and Transitions of Care (including the Behavioural Science sub theme), and Safety in Marginalised Groups.

 

Yorkshire & Humber PSTRC – Patient Involvement in Patient Safety, Workforce Engagement and Wellbeing, Safe Use of Medicines, and Digital Innovation.

 

Imperial PSTRC – Safer Systems across the Continuum of Care, Partnering with Patients for Safer Care, Avoiding Deterioration in Complex Needs Patients, Enhancing the Safety of Medication and Technology, Improving Diagnostic Accuracy and Decision Making and Improving Diagnostic Accuracy and Decision Making.

The role of translational patient safety research during the COVID-19 crisis

By Dr Beth Fylan and Professor Rebecca Lawton

Over the past weeks we have witnessed the raised profile of health research and the fundamental role it is has in addressing the international crisis caused by COVID-19.  Health research organisations around the world have rallied to focus on identifying treatments and vaccines to aid prevention, recovery, save lives and enable societies to return to near-normal functioning. The hugely important role of behavioural science in understanding how best to persuade and support the general population to play their part has also been evident throughout. In the UK, the Government has placed its financial clout behind vaccine development and clinical trial centres are galvanised in establishing an evidence base to help clinical decision making. The RECOVERY trial established by the University of Oxford, for example, is currently testing a range of potential treatments for COVID-19 in 170 sites, including our own Bradford Teaching Hospitals NHS Foundation Trust.

Beyond this crucial, clinically focused work, applied research groups such as ours have been considering how their disciplinary expertise can contribute to benefit the healthcare system at this time. NIHR Patient Safety Translational Research Centres occupy a unique space in national healthcare research. Our role is to explore concepts, theories and methods that may have a role in increasing the safety of care but have not yet been developed or fully exploited. In short, we ‘aim to turn patient safety discoveries into practice’.1 We translate through developing new knowledge and understanding, or skills and tools which can be used or tested further.The commitment to funding such exploratory research is one of the reasons why the UK is at the forefront of health research internationally, recognising that innovation is key to enhancing the benefits gained from decades of work improving the safety of care.

We have come a long way in the UK since the publication of the report An Organisation with a Memory in 2000 3 in understanding the extent and nature of unintended harm to patients. Whilst the NHS has made great strides to eradicate many major of causes of harm to patients, such as wrong-site surgery and retained foreign object post-surgery (often called the ‘biggies’ of patient safety), harm is still prevalent (estimated to affect one in 20 patients).4 We have recognised the need in tandem to explore different ways of improving care.

Early translational research offers a route into these improvements and PSTRCs are a crucible for ideas yet untried and untested. Like others during this time of crisis, we find we have a role to play in the ongoing effort and the opportunity to adapt our work to address some of the challenges the NHS – and the public as a whole – faces. This means that, while some of our studies have been paused to reduce staff and patient burden, we can adapt quickly to the COVID-19 challenge by refocussing our early translational research where it can potentially bring benefits.

For example, our ongoing portfolio of work using resilient healthcare theory has given us the building blocks of a study to monitor and understand organisational response to the crisis. Similarly, our work to understand the impact of healthcare staff wellbeing and emotions in teams on care quality has enabled us to launch resources to support them given the unprecedented conditions that staff are working under. We are also adapting current studies in order to understand how patients and the public are supporting the health system by staying safe or why, in some instances, they may be staying at home, rather than seeking care if their health is deteriorating.

Having opened up new areas of enquiry based on our learning from previous work, we hope the findings from these studies will contribute to the growing knowledge of how we work together to respond to a patient safety crisis on a grand scale as well as how safety can be maintained when the norms and rules for delivering the service no longer work.

All us who have worked in health research for many years are deeply impressed, not only by the speed of the response of the academic and clinical research community to understanding this disease, but also to national bodies – such as the National Institute for Health Research (NIHR) and the Health Research Authority – which have swiftly adapted processes to agree funding for research studies, give due oversight to their protocols and approve them. We hope that collectively we can generate an organisational memory for working in a crisis that will help us think differently about safety in the future.

And, finally, we remain grateful for the extraordinary work of our frontline NHS, social care and key worker colleagues in tackling the COVID-19 crisis.

 

 

  1. National Institute for Health Research. £17 million invested in NIHR Patient Safety Translational Research Centres. 13 February 2017. https://www.nihr.ac.uk/news/17-million-invested-in-nihr-patient-safety-translational-research-centres/12278
  2. Aronson J. When I use a word . . . Defining translational research. BMJ Opinion 2017. https://blogs.bmj.com/bmj/2017/04/21/jeffrey-aronson-when-i-use-a-word-defining-translational-research/
  3. Department of Health. An organisation with a memory: report of an expert group on learning from adverse events in the NHS. London: The Stationery Office, 2000.
  4. Panagioti M, Khan K, Keers RN et al. Prevalence, severity, and nature of preventable patient harm across medical care settings: systematic review and meta-analysis. BMJ 2019; 366 :l4185