Archive | January, 2014

Get involved!

31 Jan

by Philip Hammond, PPI Coordinator for the GM PSTRC

Image

We are currently looking for people to get involved in our research by becoming a Core or Associate member of our Research User Group (RUG).

As a Greater Manchester wide centre we are keen to reach as many people as possible with our work and involve both patients and members of the public from the area.

As well as our patient populations, we are particularly keen to reach people working in primary care (doctors, nurses, pharmacists, practice staff etc) and those who work in or have a specialist interest/knowledge in patient safety or research.

Our Research User Group (RUG) was established to work in partnership with the research teams, advising or assisting with research developments, and consists of:

Friends of the GM PSTRC

Who receive regular newsletters and information about the work of the centre and are offered opportunities for further involvement or participation.  Becoming our friend is as easy as letting us have your email address on our online form.

Associate Members of the RUG

As well as receiving the regular newsletters, our Associate Members meet annually.  They will be actively involved in one (or more) of the research projects.  We are currently accepting applications for Associate Membership, please see our website for further details.

Core Members of the RUG

A core group of 12 appointed members who meet six-weekly.  The elected Chair sits on the Executive Management Board (one of the governance bodies within the GM PSTRC).  Members are aligned to one of the research themes to help develop further ways to involve members of the public and to recruit Associate Members.

We are currently looking for a new member to join the Core RUG.  You will need to use NHS primary care services (GP surgeries or pharmacies) in Greater Manchester, have a keen interest in health research and be able to commit to regular meetings (fees and expenses will be reimbursed).

For more information and to download an application pack for either Associate or Core membership, please visit our website.

Reflections… of a conference

30 Jan

by Jo Beresford, member of the GM PSTRC Core Research User Group (RUG)

Jo Beresford Exeter Conference photo_300x300

I was very worried about the flight down to Exeter on a propeller plane to get to the New Developments in Public Involvement in Research Conference but in the end it was all ok – well, I got there!

Once I was registered and in possession of my conference pack it was straight into a very passionate opening keynote speech by Sir Iain Chalmers on ‘ways in which patients and the public can help to reduce waste in research’.  This set the tone for the rest of the conference, every person I met was very enthusiastic about the importance of Patient and Public Involvement (PPI) in Health Research, how beneficial it is and how the public and researchers can both learn and develop from each other.

There was even an interactive room where I could explore physical models of mapping PPI in research as well as draw things yourself; I found this a useful space to get a little break from the hustle and bustle of the conference whist having useful and informative conversations with several researchers.

I had a fantastic time at conference and really enjoyed meeting all the new people I did along with all the workshops I attended. These have really increased my understanding of PPI, as my involvement in the RUG is the first time I have had any involvement in PPI at all, so it was a great experience all round. I attended workshops in ‘Exploring the Meaning of Involvement in Applied Health Research in PenCLAHRC’, ‘PPI in Theory and Practice’ and a presentation on ‘Can Individuals with Lived Experience of a Mental Health Condition Contribute to Analysis and What Does Everyone Gain?’ One of the main points that I learnt was that everyone has a contribution to make to research and it is those with direct experience that can often produce the most impact on research-it is important that individuals’ are not “written off” by researchers’ just because they have a particular health condition.

The conference expanded my knowledge and breadth of PPI considerably; I never knew there were so many different ways in which Patients and the Public can be involved in research! One particular example was taking part in a mock decision-making panel for the approval of the drug Liraglutide to see if PPI members would come to the same decision as the professionals. In the workshops I attended patients shared stories about their care and areas of concern where they felt their health was put at risk. This is something that will be particularly useful for working within the GP Theme of the GM PSTRC as it is these issues that we will be interested in when investigating “Never Events”.

Integrated Care: Some unexpected frustrations of research in the NHS

24 Jan

by Jonathan Stokes, PhD student in Multimorbidity theme

Image

I’ve recently started my PhD at the NIHR Greater Manchester Primary Care Patient Safety Translational Research Centre in the Multimorbidity theme. My project plans to look at case studies of models of integrated care being piloted in the NHS at present.

Integrated care is quite a loosely defined idea. One review found over 175 different definitions… Basically, it boils down to the better linking of various aspects of health/social care, so that the patient experiences a more coordinated, efficient and effective service.

Despite there being no consensus definition, and only limited evidence of effectiveness of any specific models of integrated care, high-level policy makers are heavily pushing for the implementation in England (and worldwide). There seems to be an inherent good seen in the idea of ‘integration’, after-all the opposite is fragmentation. Not only this, but there is a clear logic in pushing for integration when we consider the evolving case-mix health systems are facing globally.

We are seeing worldwide an ageing population with a shift in the diseases encountered towards patients with multiple (hence the term multimorbidity), long-term, chronic conditions (e.g. cancer), instead of the main burden being acute conditions (e.g. malaria infection – conditions which of course remain a huge burden in the developing world) as was historically the case. This new burden requires a different mode of treatment than our health systems have evolved to offer.

These patients with multimorbidities often require treatment from a number of different specialists, often in a variety of locations at different times. As it stands, this fragmentation in the working of the health system is an obvious safety concern. Patients need to explain their medical problems to each new health professional they see, often assuming the professional knows their general case history (which they usually don’t thanks to a lack of medical record linkage in most places…), as well as the safety issues of someone who is frail travelling to the multiple appointments in the first place.

Better coordination of services for these patients then, should of course solve obvious opportunities for harm to come to a patient as they fall through the gaps between services.

My project then, aims to provide evidence for which real-life models of integrated care, being trialled all over the country at present, work most effectively.

Unfortunately I am already facing some frustrations in doing so, from a source I really didn’t expect to find these when studying in the NHS setting (I’ve come from studying mostly international health systems): It is not easy to find out what is being commissioned by each locality in the country!

This lack of transparency really makes it difficult to look at things at a systems level, and so to effectively use the rich data source available in primary care in this country. It’s a real shame that the NHS have failed to manage this data in a usable way for researchers like myself. This frustration has in fact led me to my first piece of work which I hope will expose this lack of transparency in the system, and while doing so, will hopefully give me a better perspective of what the state of integrated care in our country actually is. Hopefully, by starting here we can begin to learn what in fact works best for those who need it.

Watch this space…

What links multimorbidity and palliative care?

16 Jan

by Rebecca Hays, Research Associate for the Multimorbidity theme

Image

In November 2013, Peter Bower (Theme Lead), Gavin Daker-White (Research Fellow) and I visited the Primary Palliative Care Research Group (PPCRG) at the University of Edinburgh. The goal of palliative care is to provide the best possible quality of life for patients approaching the end of life, and their families, through physical, psychological, social and spiritual support to prevent and relieve suffering. The PPCRG aim to extend palliative care so it starts earlier, is provided for more life-threatening illnesses, and can be delivered in all community settings.

One study carried out by the PPCRG, with colleagues from King’s College London, the University of Warwick and the University of Cambridge, concerned the co-ordination of care for people at risk of dying. In this study, researchers observed the work of healthcare providers in different care settings, including their consultations with patients. The research team also interviewed patients in the last 12 months of life, their carers and healthcare providers, and followed them up for 9 months.

We will use similar methods in the ‘MAXimising Involvement in MUltiMorbidity (MAXIMUM) in Primary Care’ study. Over the next two years, we will observe interactions between patients and their care providers, and interview them to learn more about the care of people with multimorbidity. Through these methods, we will explore the ways in which multimorbidity can lead to safety problems in primary care, and how patients, carers and healthcare providers respond to potential safety issues.

During our visit, we discussed the overlap between people with multimorbidity and those in the last 12 months of life, who are eligible for palliative care. Multimorbidity was an unexpected focus of the PPCRG’s co-ordination of care study, and the research team are now revisiting data they collected on multiple conditions and patient perspectives of illness. Patients’ views on their health can be affected by a number of things, including how many medications they take and how well they are able to manage their co-occurring symptoms and conditions.

Managing care can be difficult for people with Multimorbidity and those at risk of dying. There may be communication problems between patients and healthcare providers, and it can be challenging to co-ordinate the care provided by different services. During our meeting, researchers from the PPCRG emphasised the important role informal carers play in supporting their family members. Through our work, we hope to identify opportunities for both patients and carers to become more involved in their care, and minimise safety failures.

Our first meeting with researchers from our theme…

6 Jan

by Carolyn Gamble, Joanne Beresford and Sandra Griesbach, members of the Core Research User Group (RUG) Image As part of our work with the GM PSTRC, members of the RUG (Research User Group) are aligned to one of the five themes to support and advise on wider public involvement.  We are aligned to the Safety in General Practice theme, and we wanted to capture our initial thoughts of our first meeting with Sudeh Cheraghi-Sohi (Research Fellow) and Rahul Alum (Research Associate). When we first met, Sudeh and Rahul introduced us to projects currently planned within the theme and we discussed some of the options that we could be involved in developing this work as lay members – and they even provided us with cake! Jo’s thoughts: I was particularly attracted to the patient handbook, providing patients of primary care services with the information they require to access services and to get the best from appointments.  The accreditation scheme project planned for the future is also appealing as this fits strongly with my own personal interests and will provide a Primary Care Accreditation for UK general medical practice. Sandra’s interests:   I’m really interested in all the fascinating projects  we will be looking at within the theme, but initially I hope to help out with discovering how ‘Never Events’  are  identified within the Primary Care setting  and how these are recorded and used to improve patient safety.   As a patient I want to believe that a mistake in my diagnosis or treatment cannot be made and research into these events may give us insight into how we can move closer to that goal.  Watch this space! Carolyn’s musing: Like Jo and Sandra, I find this work really interesting and have a personal interest in many of the research topics included in this theme.  Of particular interest is the “Definitive Epidemiological Assessment of Error” ( EPassE) which aims to undertake an assessment of diagnostic error in order to define the rate of occurrence in GP practices. I am looking forward to supporting the exploration of key indicators of error, in order to prevent future patient safety implications of for example, of delayed diagnosis or misdiagnosis. Following the initial meeting, we have kept in touch by email to make sure we are working together as a team to ensure we do not cross over each other. The three of us have also met together to start our initial project work; identifying patient safety issues discussed in online patient forums  This is definitely an exciting collection of research projects and we’re all looking forward to being involved in this work.