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Black and minority ethnic involvement in health research: Veena Parmar

20 Jun

Veena Parmar_photo_June 17

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

12 May

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

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

28 Mar

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

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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.

The ‘triple aim’: a reality check

27 Jan

by Jonathan Stokes, Research Associate in the Centre for Health Economics at The University of Manchester

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In December, I completed the final exam (or ‘viva’) for my PhD, which was funded by the NIHR Greater Manchester PSTRC. In the discussion section of my thesis, I presented an argument that my examiners suggested I should explore further, so I’m using this blog post to try and record some initial thoughts, which I hope to turn into an academic paper at some point (so feel free to post any feedback you have below).

So, my argument, briefly, was this:

  • Health systems are recognised to have a so-called ‘triple aim’, aiming to improve health and satisfaction of patients, while reducing costs. With the move towards ‘integrated care’, policymakers argue that integration can improve all triple-aim outcomes simultaneously.
  • In the NHS, integrated care is defined around the patient’s feeling of joined-up care (i.e. around the outcome of satisfaction). However, policymakers, when setting out the aims of their integrated care models aim primarily to reduce costs, usually by reducing emergency hospital admissions (probably unsurprising given the ‘NHS crisis’ currently being covered in the media).
  • But the literature tells us that the ‘triple aim’ goals are quite complexly interlinked, so achieving one does not necessarily have a beneficial effect on all of the others. For example, the highest patient satisfaction (good) is associated with the highest overall healthcare expenditure (bad), and may be also those experiencing worse health outcomes, e.g. a higher mortality rate (very bad).
  • Therefore, there is a potential conflict between the patient-level (the feeling of more joined up care for the patient) and system-level (reducing costs) goals of integrated care in the NHS, and potentially a need to prioritise aims.

Basically, there is little evidence that the ideal scenario of not having to pay for improvements in care quality is plausible (note: that doesn’t mean we can’t have this improvement, it just implies that we would need to invest more in our health system to get it). And, if we design interventions that address the NHS definition of integration and increase satisfaction with care, then we won’t necessarily meet the pressing system aims of reducing costs in the current NHS funding crisis.

So, to my mind, if we want to contain costs, this would mean that the patient satisfaction aim (while still important, and should continue to be measured) should be bumped down the priority. This is partly because people who are healthier tend to be more satisfied in any case (so it is partially a secondary outcome of better health and should take care of itself if people get better health outcomes), but also because in a tax-funded system like the NHS, where the overarching values are delivering equity and social justice, sustainability of the system is more important than preferences of the individual (i.e. ‘consumer-focused’ healthcare). Especially when aiming primarily for satisfaction of the individual harms the system.

To try and explain why this might be, imagine that if we’re primarily aiming to improve satisfaction with care, implementing an intervention where we gave everyone a dram of whisky as they waited for their appointment might send satisfaction rates through the roof, but it would cost a fortune and might not do people’s health a lot of good.

Healthcare is a complicated process (which is why it takes so long to train healthcare professionals, who in fact never stop receiving training during their working lives). One of the ‘market failures’ in healthcare (i.e. why a normal economic free-market system, where the consumer decides, doesn’t work) is ‘information asymmetry’ (i.e. the expert knows more than others, so can make the more informed decisions). While this asymmetry is clearly in patients’ favour in some aspects (e.g. experience of disease/ experience of using health services/ treatment burden etc.), it favours the physician/expert in others (e.g. treatment course in many cases/ health system setup or organisation/ cost of care etc.). The patient is therefore not likely to make the most informed decision when it comes to overall health system costs.

In view of this, I think there’s an interesting debate to be had about the role of ‘patient-centred’ care more widely, and how this fits with our system goals. For example, I went to a seminar the other day where an NHS Vanguard programme talked about how they were shifting their approach in patient care to one where they ask the patients to define their goals, asking them ‘What matters to you?’. But, before that, we’d had a talk from NHS England about the national metrics that the Vanguards would be assessed on, centred on system goals (again, primarily about reducing avoidable emergency hospital admissions). This got me thinking: what if the patient’s goal is something that doesn’t affect our system goals whatsoever, or is even completely contrary to these? If it was in the USA, the patients themselves (or their health insurer) would pay for the option and it wouldn’t matter so much, but in a tax-funded system there is more need to think resourcefully at this wider system level (and try being poor and getting decent healthcare in the USA if you think that’s the way to go instead).

The role of the patient in influencing/defining research priorities could be another debate. For example, the PSTRC and wider NIHR funders are very focused on Public and Patient Involvement (PPI) in research. But, what if the researcher (while employing common sense, and not purely as a stereotypical ivory-tower-type) has access to more knowledge about where the current knowledge gaps are, and which questions are possible to answer and how? Is it a good use of resources to pay for the ‘lay perspective’ in all cases (or at all)? (But, of course, this is just one simplified question in the debate of the role of PPI in influencing and defining research priorities, the balance of which I hope to explore further in a future post).

In sum, I think some of the assumptions we make (in good faith, I’m sure), about the aims and delivery of health services, and research to support these services, are still open to debate. While we dwell on ideally achieving all outcomes, we neglect the reality of the need for trade-offs and priority setting. But, I’d be interested in hearing your thoughts.

Reflections on ISQua 2016

16 Nov

by Sally Giles, Research Fellow in Core theme

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This year’s International Society for Quality in Healthcare (ISQua) conference took me to the vibrant city of Tokyo, famous for its incredible technological growth, its seismic activity and geological features. For me, as a former geographer, this diversity was certainly fascinating and a real attraction! The Tokyo International Forum was the chosen venue, and with its numerous different levels, it even provided a challenge to those with the best sense of direction! 

The conference this year covered eight main themes, with hundreds of concurrent sessions to choose from; including 50 minute plenary sessions, 90 minute workshops and 15 or 5 minute oral presentations. There was also an impressive display of posters in the exhibition hall. One of the main highlights of the conference was the Japanese Bento lunch boxes, which made a welcome change to the often bland and uninteresting lunches provided at conferences. I was however slightly disappointed to see so little primary care research. I therefore challenge all Greater Manchester PSTRC researchers to place primary care patient safety research on the ISQua agenda in 2017.

This year I was allocated a 15 minute oral slot as part of the Person Centred Care theme. I took to the rather large stage and presented the findings from an NIHR Research for Patient Benefit (RfPB) study, “Developing a Patient-Led Electronic Feedback System for Quality and Safety within an existing Electronic Health Record”, which has since been accepted for publication in the Journal of Renal Care. My presentation was well received with particular interest in how we were going to take the patient reporting system forward and what training would be required for the patients who may wish to use it. Definitely food for thought!

A lay member view – NIHR Greater Manchester PSTRC Away Day 2016

11 Nov

by Angela Ruddock, member of the NIHR Greater Manchester PSTRC’s Governance Research User Group (RUG)

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I and three other lay members of the Research User Group, David, John and Kay, attended the recent NIHR Greater Manchester PSTRC Away Day.

I have to say that I was not keen about the prospect of being ‘holed up’ for two days (well, an evening and a day) with a group of academic researchers.

This is no offence to researchers (!) but I confess that after many years of working in both an NHS Trust and a University environment, I was regrettably turning into a hardened old cynic when it came to these so-called ‘bonding’ sessions.  However, I can safely say that I found myself enjoying the sessions on the day.

The evening before the sessions gave me an opportunity to have some completely off the wall conversations with 2 or 3 people I did not know that well and probably had not spoken to before although I had heard them present research projects over the year. The subject matter was in fact not about research but about Prince the singer who was found dead that morning. We got into a conversation about rock stars who had made an impression on us. It turned out to be a pretty good if a bit sad leveller.

The main business commenced 9.30 the following morning with a presentation from Stephen about the James Lind Alliance, its role and its purpose. It was useful for me in appreciating the input that we as part of the PSTRC- Research User Group can make in improving communication, exchanging views and contributing the patient/public perspective in the debate about priorities.

It was really good to hear in the second and third presentations how the work of the PSTRC has had an impact on a wide range of clinical issues from mental health issues such as suicide prevention to multi medication prescribing. What particularly interested me was how many of the tools used in these research projects could be used in a variety of practical settings, for instance by GP practices, in identifying where their own Practice is in relation to others on a particular patient safety issue, by  Clinical Commissioning Groups in identifying particular areas  of concern in Greater Manchester and to share good practice or, as a final example, by pharmacists in recording and identifying where there may be particular concerns relating to certain prescribed medications when combined with others.

The only area I felt could further benefit from exploration was the patient/lay contributor input in terms of more qualitative data in some research areas and perhaps more ideas in identifying a diversity of lay input (but I would say that wouldn’t I!). I think my colleagues John and Kay from the discussion groups were well able to contribute to this area and give some clear views about added value from a patient/public perspective.

In summary I admit that I wrongly prejudged the significance of the opportunity to get into some real and practical conversations with the research teams and am convinced that it helped me understand better the issues and dilemmas facing them.  Hopefully they also had an understanding of our perspective and are more able to shape the projects in more rounded way as a result.

NIHR Greater Manchester PSTRC Meet the Team – Sudeh Cheraghi-Sohi

26 Aug

The fifth in our NIHR Greater Manchester PSTRC ‘Meet the Team’ series introduces Sudeh Cheraghi-Sohi, Research Fellow in General Practice theme.

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