Placing ALL patients and carers at the heart of patient safety research: introducing our new theme on marginalised groups

by Caroline Sanders, Research Lead in Safety in Marginalised Groups: Patients and Carers

In his 2013 review for improving patient safety, Don Berwick emphasised the importance of seeking out the voice of patients and carers, and ensuring they are ‘present, powerful and involved’ at all levels. This has been a major focus of our earlier research, our involvement and engagement work, and led to our priority setting partnership in conjunction with the James Lind Alliance in March 2017. This identified the number 1 question for future research is to understand ‘How can patient safety be assured for the most vulnerable in society?’. This recognises the widespread concerns and evidence showing that patients and carers who are already disadvantaged and marginalised, may also be at greater risk of harm within the healthcare system.  Additionally, we have not yet done enough to ensure we hear the voices and understand the experiences of marginalised groups to be able to develop appropriate and effective interventions to support patient safety for ALL patients and carers.

Our starting point for the new research that will evolve along with our further Patient and Public Involvement (PPI) work, is to acknowledge that people may be disadvantaged and marginalised by multiple factors such age, disability, ethnicity, sexuality, gender, and socio-economic disadvantage.  For example, we know that BME groups have poorer health outcomes, and poorer access and experiences of healthcare services. People may also be marginalised because of stigma and poor access to services for specific conditions (e.g. mental health problems); or they may be marginalised because of the circumstances or settings in which they live (e.g. living alone, caring for someone at home, living in a rural setting, in a care home or prison, being homeless).

In this theme, we will be working closely with other themes and our PPI contributors to focus on and understand safety risks and concerns for specific population and patient groups. For example, what are the particular challenges in relation to communication, which we know is considered by patients and carers to be a crucial foundation for safe care? What are the challenges for marginalised groups of patients in the ever-changing care context, where there are new responsibilities and health care practices expected as a part of enabling better self-management? We will co-design or adapt tools to support patient safety that will be tailored for such groups.  This may include use of mobile apps or other technologies, and we will also focus on the help and support that people might need to make sure they can use these, or enable appropriate alternatives. We know this means we need to be creative in reaching out to communities and groups who currently feel disempowered or hidden in relation to healthcare research and service provision. We are looking forward to this exciting opportunity to seek out some of the quietest and most hidden voices to ensure the most vulnerable can have better and safer care.

Please see our webpage or contact us for further information or to share any comments and suggestions.

Patient Safety: the way forward

by Stephen Campbell, Director of the NIHR Greater Manchester PSTRC

Seventy five percent of patient safety research is focused on hospitals. Less is known about patient safety outside hospitals, yet 85% of NHS contacts happen in these settings, mostly in general practice and in pharmacies. The scale of primary care in England is huge. There are 340 million general practice consultations annually, with 2% involving a patient safety incident, which means 6.8 million times each year where a patient is potentially at risk of harm. There are one billion prescriptions issued per year outside of hospitals, with 4.9% having an error – 49 million every year. And 20% of patients discharged from hospital will report an adverse event, which could lead to costly readmission to hospital. On 1 August 2012, the Greater Manchester Primary Care Patient Safety Translational Research Centre (Greater Manchester PSTRC) started, funded by the National Institute for Health Research (NIHR).  Our PSTRC has been a groundbreaking centre as it was the first patient safety centre to focus on primary care (general practice, community pharmacies etc.) as well as the interfaces with hospital care. The focus on primary care was intentional and needed.

We have achieved many improvements in primary care safety over the last 5 years. For example, we have developed a “Safer Prescribing” e-learning course for GPs, which has reduced prescribing errors.  We have developed a Medication Safety Dashboard as a “missed opportunity detector” that has resulted in fewer patients being at risk of potentially hazardous prescribing. We have used mobile technology such as smartphone apps to deliver safer healthcare. As an example, ClinTouch monitors symptom change in people with serious mental illness. We have worked in partnership with patients, GPs and pharmacists to create a Patient Safety Guide for general practice.

I am a health services researcher who has focused on the quality and safety of primary care for 25 years. Over that time there have been many advances in improving quality and safety but equally people are living longer, often with several health conditions requiring care from many different sources, in a world that becomes ever more complex with new digital technologies and “intelligent healthcare communities”. Most research and advances in patient safety are typically found within single care settings, such as the emergency department. Less attention has been paid to safety between (transitional) community providers and hospital care settings. Delayed diagnosis, incomplete patient information and medication errors are examples of problems, which may occur both within settings and across an interface. That is why we shall focus on primary care but also on transitional care settings in our second period of 5-years of funding from the National Institute for Health Research (NIHR), which started on 1 August 2017.

Over the next 5 years, our research will focus on:

• Safety Informatics – developing technologies and behaviours that create safer care systems and to prevent diagnostic errors – working with the Health e-Research Centre
• Medication Safety –developing safety management systems to ensure safer prescribing and treatment and to prevent medication errors
• Safer Care Systems and Transitions – a new theme, to make care safer for patients moving between care settings
• Safety in Marginalised Groups – a new theme – to enable patients and carers to take control of their care. There will be a key focus on patients and carers as well as mental health, working with the Centre for Mental Health and Safety

Service responsibility and patient responsibility for patient safety go hand-in-hand. They are equal. A member of the public seeking healthcare as a patient for themselves or a loved-one deserves the safest and best quality care possible. That is the duty of healthcare providers and professionals. Avoiding errors, or identifying and correcting them, is a high priority. Equally, patients can do much to keep themselves safer in terms of accessing care appropriately, taking medications as prescribed, self-managing a healthy lifestyle with sensible eating and drinking as well as exercising etc. This is the responsibility of each member of the public. It is a shared responsibility that requires co-design and partnership working, which underpins everything we do.

A key aspect of our work, and something which I think is crucial to the PSTRC, is capacity building and training people to be able to conduct and apply research. This includes recruiting PhD students, helping a group of pharmacists to work together on research projects in their own pharmacies, and training researchers as well as members of the public and patients. Healthcare isn’t just about a medical procedure or treatment option, it is about people, both those who deliver the care and those who receive it or work in partnership together. The PSTRC aims to be an interactive research centre working with healthcare professionals, the NHS, local authorities, industry and patients, carers and members of the public to make healthcare safer.

Much is happening in Greater Manchester that gives us opportunities to make a real difference. We will work across Greater Manchester’s newly-integrated Health and Social Care Partnership which serves 3 million people. The Connected Health Cities programme across the north of England will help us get our research implemented. We will continue to work in partnership with colleagues at the University of Nottingham, especially in the research on safer transitions and medication safety. We look forward to new collaborations with colleagues at the Christie NHS Foundation Trust and Central Manchester NHS Foundation Trust. There is much we can do using new digital technologies and behavioural interventions to improve safety and healthcare for the benefit of patients.

I want to thank everyone who has been involved with the PSTRC over the last 5 years. I look forward to working with everyone in the new PSTRC to continue our exciting, innovative and important research. The PSTRC has many outstanding and world-leading researchers and an excellent core staff. There is much to do but we will continue to build the capacity to make care safer.

The PSTRC has a strong involvement and engagement agenda working alongside members of the public and patients as well as healthcare professionals. If you would like to find out more about our research and how you can get involved then please email Zarina Saeed at zarina.saeed@manchester.ac.uk .

 

Why does PPI benefit research?

by Sally Giles, Research Fellow in Core PPI Research theme and Philip Hammond, PPI Coordinator

Why do PPI?

“All organisations should seek out the patient and carer voice as an essential asset in monitoring the safety + quality of care” Berwick Review, July 2013

We believe that including the patient voice in our research makes it more meaningful and relevant to the real world.  We have experienced examples of when patient feedback has influenced our research.  As part of the Greater Manchester PSTRC we wanted to look at how PPI impacted on our research in an academic context.  To do this we had a look at the academic literature, firstly to find out why people involve members of the public in their research. We discovered that people who use health services can help to ensure that issues that are identified and prioritised are important to them and therefore to health care, public health and social care as a whole.  Public involvement can help to ensure that money and resources are not wasted on research that has little or no relevance and that being involved in research can help empower people living with a medical condition.  We used this as a basis to develop our own PPI structure within the Greater Manchester PSTRC.

The Research User Group (RUG)

The RUG started off as a group of 12 members of the public, who met every 6 weeks.  Each of the research themes within the Greater Manchester PSTRC were allocated 2 or 3 members to their theme.  A RUG evaluation highlighted that some researchers were heavily reliant on their aligned members for all projects within their theme.  It also highlighted that it was challenging to see how the RUG was having an impact on research, as this impact was mainly happening at project level.   Based on feedback of RUG members and in an attempt to widen involvement by bringing in more associate members of the public, a restructure to the RUG took place.  It was agreed that there should be a split between governance and project level PPI.  This new structure was implemented two years into the centre.

The restructure enabled us to focus more on project level PPI, and we have a number of examples of how PPI has benefitted the research on specific projects.  Some examples follow below:

1.   Multimorbidity Research Advisory Group (MRAG) was set up to involve patients and carers in the development of resources and new research projects for the Multimorbidity theme.  It consisted of 18 group members who provided feedback on research, shared ideas, helped to set research priorities and supported two applications for further funding.

2.   In the Interface & Informatics theme patients and public contributors have been involved in enhancing research by taking part in a number of  sessions aimed at investigating the relevance of an established patient portal for patients with long term conditions (PatientView) and identifying strategies for improvement. This group also commented on draft study protocols, designed and co-facilitated a larger workshop and helped to identify social media and patient associations as an additional recruitment strategy (resulting in 25% more recruits).

3.      In the Medication Safety theme members of the public have been involved in the recruitment of participants for focus groups, co-facilitation of focus groups and coding of transcripts using an existing framework.

4.      For the Core theme members of the public have helped develop the Primary Care Patient Measure of Safety (PC_PMOS) study.  They helped to develop the items to be included in the PC_PMOS and recruited patients in GP practices to complete the PC_PMOS, Patients were able to relate more easily to the PPI members than the research team, which helped to increase participation in the study

5.      In the GP theme there has been public and stakeholder involvement in the patient safety guide project via 3 different involvement groups with key stakeholders.

Thoughts for the future

Our advice to anyone wanting to develop a PPI structure within a large (or small) research centre is to plan carefully by starting with a clear strategy, but be willing to accept that this will constantly change as the needs of those involved evolve.  Involvement needs to continue to be an iterative process, people have different (and changing) needs and get involved for different reasons, and equally research studies have different aims and priorities which need to be addressed when planning involvement.  We see involvement as being broader than patients or members of the public.  Often the end users of our research have been health professionals and as such, our definitions of involvement and engagement have evolved to include all relevant stakeholders.

Introducing…Safety in Marginalised Groups: Mental Health

by Nav Kapur and Roger Webb

Safety in mental health services:  reducing suicide and self-harm

Nav Kapur, Research Lead, says:

‘It’s fantastic to be involved in the new NIHR Patient Safety Translational Research Centre.  It is particularly exciting that safety in mental health services will be a prominent part of the new work.  We are really looking forward to getting started.  We will be making new appointments (both Research Associates and funded PhD students) in order to make this a world-beating research programme.  The focus on both suicide and self-harm is really pertinent given the current policy and health priority on these very important outcomes.  So over the summer and autumn we will get going on the actual research using a variety of methods.  Personally I can’t wait to start working with the internationally-leading team of researchers, academics and clinicians across the PSTRC’.

Roger Webb, key project lead, says:

‘I’m enthused by this wonderful new initiative, which enables our Centre for Mental Health and Safety to join forces in working collaboratively with a much larger group of internationally renowned experts in the patient safety field. Our planned work programme, focussing on self-harm and suicide, encompasses a number of ground-breaking studies.

These studies include:

• evaluating how changes to health service provision may impact on national suicide  rates
• developing and testing psychological treatments following self-harm
• investigating key transitions from institutional care to living back in the community, among discharged patients and released prisoners with enduring mental health problems
• assessing clinical management of common mental health problems across healthcare sectors, and subsequent risks of self-harm, suicide and other causes of premature death.’

Black and minority ethnic involvement in health research: Veena Parmar

Veena Parmar has been providing a patient/public perspective for NIHR Greater Manchester PSTRC student Shoba Dawson’s PhD project about barriers to involvement in research among BME (black and minority ethnic) groups.  In this article she chats to Jill Stocks (Research Fellow, Core theme) about her experience.

Jill: Hi Veena, tell me a little about your background.

Veena: I am a second generation Indian born in Nairobi and educated in the British colonial system. My family is a blend of Anglo Indian Portuguese culture. It’s great when we have family gatherings to exchange our various views. The Portuguese family go on about Vasco da Gama, Christopher Columbus, Cork, port wine and the spice trade while we Anglo Indians brag about the industrial revolution, trains, the cotton and motor industry, and so on. Since being married I have lived in and around Manchester.

Jill: Before becoming involved with the Greater Manchester PSTRC what did you know about Patient and Public Involvement (PPI) in research?

Veena: I had only heard about people who were participating in clinical trials, I had some friends who were part of a rheumatism trial.

Jill: What made you decide to become involved in PPI?

Veena: At first I was dubious but Shoba really encouraged me to come and meet her and the other PPI partner. At the meeting I found the topic really interesting, we read some case studies and gave our opinions.

Jill: What have you personally got out of the involvement?

Veena: I learnt a lot and found myself reflecting on my own multicultural experience through our discussions. Shoba is a kind person and always very supportive.

Jill: What support or advice were you able to provide?

Veena: I offered advice on how to get BME communities involved in research. I had lots of ideas and suggestions about how to work through community leaders and how to approach women in socially-conservative communities.

Jill: What aspects did you enjoy least or find difficult?

Veena: I was asked to give a presentation and imagined it would be in a theatre with a large audience so I felt unable to do it. In fact it was an informal talk with a small audience so I felt a bit disappointed because I would have felt confident to talk if I had known that.

Jill: What advice would you give to anybody thinking about getting involved as a PPI partner?

Veena: Make sure you understand what you are getting yourself in to and ask questions. Keep an open mind and you will learn a lot.

Jill: Would you do more PPI in future?

Veena: Yes – absolutely.  Although I am about to retire and hope to do some travelling so it would have to be as a short term commitment…

NIHR Greater Manchester PSTRC Meet the Team – Sally Giles

The seventh in our NIHR Greater Manchester PSTRC ‘Meet the Team’ series introduces Sally Giles, Research Fellow in our Core PPI research theme

Sally Giles_Meet the Team_v1

Greater Manchester PSTRC Dissemination Event: A Lay Delegate’s Perspective

by Moira Lyons, member of the NIHR Greater Manchester PSTRC Research User Group (RUG)

As a Core Member of the Greater Manchester Primary Care Patient Safety Translational Research Centre (GM PSTRC)’s Research User Group (RUG), I was delighted to be invited to attend the Centre’s recent flagship dissemination event, “Safer Primary Care: A shared responsibility for system-wide learning”, which was held over two days at the Manchester Conference Centre. For me, the inclusion of members of the public in the delegate list (and not purely as spectators – several RUG members took part in the delivery of workshops, alongside researchers) underlined the genuine commitment to patient and public involvement apparent in every aspect of the Centre’s work.

It was very exciting to see the evidence of how much had been achieved over the last five years and to hear something of the plans for the new PSTRC! The atmosphere was one of expectation and enthusiasm and an inextinguishable optimism for the future. One theme resonated throughout – communication and sharing data. The more we can make use of the data available to us and share the information we have with all parties involved, the better it will be for everybody and the easier it will be to progress all aspects of patient safety. And what better exemplification of that than this event!

The speakers were relevant, informative and entertaining, the organisation was faultlessly streamlined – even the catering was of a high standard, plentiful and varied. A balance was struck between opportunities to listen and learn and opportunities to discuss and ask questions. The poster session was a lively event, as presenters eagerly approached delegates who showed an interest in their work. The diversity of research within a common theme was impressive, as was the dynamic exchange of information that drew everybody in. For example, I had a very interesting discussion with two GPs about the differences in diagnosing practice between the UK and other parts of the European community; a Dutch GP will routinely consider the option of whether or not there is “a need to treat” – a relevant concept in view of the current concern about overprescribing. It was also good to hear a GP decry the use of the “one appointment one issue” policy that has been adopted in some general practices.

The Event Dinner at the Principal Hotel, on the evening of the first day, was well attended. The after-dinner speech, delivered by Professor Richard Roberts, was a highlight. Even though, as he pointed out, he was all that stood between diners and dessert, his audience was captivated by a superb combination of thought provoking comment and insightful reflection, informed by personal experience, as he considered the future of primary care.

The two days passed all too quickly.