Category Archives: Guest Blog

Publishing Health Economic Models

It has increasingly become de rigueur – if not necessary – to publish the primary data collected as part of clinical trials and other research endeavours. In 2015 for example, the British Medical Journal stipulated that a pre-condition of publication of all clinical trials was the guarantee to make anonymised patient-level data available on reasonable request.[1] Data repositories, from which data can be requested such as the Yoda Project, and from which data can be directly downloaded such as Data Dryad provide a critical service for researchers wanting to make their data available and transparent. The UK Data Service also provides access to an extensive range of quantitative and, more recently, qualitative data from studies focusing on matters relating to society, economics and populations. Publishing data enables others to replicate and verify (or otherwise) original findings and, potentially, to answer additional research questions and add to knowledge in a particularly cost-effective manner.

At present, there is no requirement for health economic models to be published. The ISPOR-SMDM Good Research Practices Statement advocates publishing of sufficient information to meet their goals of transparency and validation.[2] In terms of transparency, the Statement notes that this should include sufficiently detailed documentation “to enable those with the necessary expertise and resources to reproduce the model”. The need to publish the model itself is specifically refuted, using the following justification: “Building a model can require a significant investment in time and money; if those who make such investments had to give their models away without restriction, the incentives and resources to build and maintain complex models could disappear”. This justification may be relatively hard to defend for “single-use” models that are not intended to be reused. Although the benefits of doing so are limited, publishing such models would still be useful if a decision-maker facing a different cost structure wanted to evaluate the cost-effectiveness of a specific intervention in their own context. The publication of any economic model would also allow for external validation which would likely be stronger than internal validation (which could be considered marking one’s own homework).

The most significant benefits of publication are most likely to arise from the publication of “general” or “multi-application” models because those seeking to adapt, expand or develop the original model would not have to build it from scratch, saving time and money (recognising this process would be facilitated by the publication of the technical documentation from the original model). Yet it is for these models that not publishing gives developers a competitive advantage in any further funding bids in which a similar model is required. This confers partial monopoly status in a world where winning grant income is becoming ever more critical. However, I like to believe most researchers also want to maximise the health and wellbeing of society: am aim rarely achieved by monopolies. The argument for publication gets stronger when society has paid (via taxation) for the development of the original model. It is also possible that the development team benefit from publication through increased citations and even the now much sought after impact. For example, the QRISK2 calculator used to predict cardiovascular risk is available online and its companion paper [3] has earned Julia Hippisley-Cox and colleagues almost 700 citations.

Some examples of published economic models exist, such as a costing model for selection processes for speciality training in the UK. While publication of more – if not all – economic models is not an unrealistic aim, it is also necessary to respect intellectual property rights. We welcome your views on whether existing good practice for transparency in health economic modelling should be extended to include the model itself.

— Celia Taylor, Associate Professor

References:

  1. Loder E, & Groves T. The BMJ requires data sharing on request for all trials. BMJ. 2015; 350: h2373.
  2. Eddy DM, Hollingworth W, Caro JJ, et al. Model transparency and validation: a report of the ISPOR-SMDM Modeling Good Research Practices Task Force–7. Med Decis Making. 2012; 32(5): 733-43.
  3. Hippisley-Cox J, Coupland C, Vinogradova Y, et al. Predicting cardiovascular risk in England and Wales: prospective derivation and validation of QRISK2. BMJ. 2008; 336(7659): 1475-82.

Sustainability and Transformation Plans in the English NHS

Sustainability and Transformation Plans (STPs) are the latest in a long line of approaches to strategic health care planning over a large population footprint. These latest iterations were based on a one million plus population, looked at a five year timescale, were led by local partners (often acute trusts, but sometimes, as in Birmingham and Solihull, by the Local Authority), and focused inevitably on financial pressures. The plans were published in December 2016 and now the challenge to the STP communities is further refinement of the plans and, of course, implementation.

The Health Service Journal (HSJ) reviewed the content of the STPs in November 2016 and highlighted three common and unsurprising areas of focus: further development of community based approaches to care (notably aligned to the New Models of Care discussed in the CLAHRC WM News Blog of 27 January; see also https://www.england.nhs.uk/ourwork/new-care-models/); reconfiguration of secondary and tertiary services; and sharing of back office and clinical support functions. More interestingly, the HSJ noted an absence of focus on social care, patient/ clinical/ wider stakeholder engagement and on prevention and wellbeing.

The King’s Fund has produced two reviews of how STPS have developed in November 2016 and February 2017. These have been based on interviews with the same sub set of leaders , as well as other analyses. Both have reached similar conclusions. Recommendations have included the need to: increase involvement of wider stakeholders; strengthen governance and accountability arrangements and leadership ( including full time teams ) to support implementation; support longer term transformation with money, e.g. new models of care, not just short term financial sustainability; stress-test assumptions and timescales to ensure they are credible and deliverable, then communicate with local populations about their implementation honestly; and finally, align national support behind their delivery, e.g. support, regulation, performance management and procurement guidance.

A specific recommendation relates to the need to ensure robust community alternatives are in place before hospital bed numbers are reduced. The service has received strong guidance about this latter point from NHS England in the last few weeks. Various other Thinktanks have also produced more or less hopeful commentaries on STPs, such as Reform, The Centre for Health and Public Interest and the IPPR; they all say they cannot be ignored.

Already, in March 2017, the context is shifting: yet again, ‘winter pressures’ have been high profile and require a NHS response; the scale of the social care crisis has become even more prominent; there is a national push to accelerate and support change in primary care provision.

Furthermore, the role of CCG is changing in response: some are merging to create bigger population bases which may or may not be the same as STP geography; some GP leaders are moving into the new primary care provider organisations; the majority of CCGs will be ‘doing their own’ primary care commissioning for the first time just as the pace of primary care change is increasing; some commissioning functions may shift to new care models such as accountable care arrangements. It is clear that for some geographies and services the STP approach could work, but more local and more national responses to specific services and in specific places will continue to be needed. All these issues will influence how the STPs play out in the local context.

— Denise McLellan

The Evolving Role of the CLAHRC in the Use of Evidence to Improve Care and Outcomes in Service Settings

If we are to use public funds to support research, there is an assumption that the outcome of that research will be improvements to the service. This exchange, however is problematic. CLAHRCs are set up to address this interface in a particular way, namely to evaluate service interventions. As well as generating new knowledge for the system, there is a wider aspiration of building a system-wide ‘habit’ of using evidence to drive service change and evaluating the output.

As part of the consideration of how CLAHRC West Midlands evolves, we would like to hear readers’ views as to how well it has done and what it should do in the future.

The use of evidence to improve practice in service settings has demand and supply side factors. The service has to want to use evidence, be supported to use evidence, and have the capacity to make changes in response. On the research ‘supply’ side, there has to be a suitable body of existing evidence, researchers have to have the skills and capacity to develop suitable research methods and to convey the outcomes in a usable form.

Even if all these factors co-exist, barriers, such as changed external environments, resistance to change, and timing issues, can thwart the exchange.

CLAHRC WM has tried to address this in a number of ways. It has created new roles:

  • Embedded posts: academic researchers jointly funded by service and research institutions, working on agreed projects within a service setting
  • Diffusion fellows: experienced practitioners supported to undertake research in a service area.

Patients and the public are central to driving the direction of research: their involvement at all stages of the research cycle means that topics are relevant to them and meet their needs. In addition, CLAHRC WM has employed a range of dissemination methods, both traditional and innovative, to share research findings. These include publishing summaries of evaluations completed, running workshops and, indeed, regular publication of this articles in this blog.

Service evaluation is not the only form of research being undertaken within service institutions, nor is CLAHRC WM the only source of evaluation support. With the current focus on integration, there is a question as to how CLAHRC WM could be better integrated within the service’s own research and development strategies. However, one has to be mindful that the budget for CLAHRC WM is tiny compared to the billions of health care spent in the West Midlands each year and therefore it has to take care to target its resources.

In future blogs we will look more closely at some of these issues, with interviews with those occupying embedded/ diffusion roles. Meanwhile, we would welcome your views and thoughts as to how CLAHRC WM should evolve in this regard, so please comment or get in touch; it would be much appreciated.

— Denise McLellan

It’s Never Too Early: Policy Implications From Early Intervention in Youth Mental Health

Two pieces of news may have escaped your attention in recent months: the first was that in the post-Brexit cabinet re-organisations, the Secretary of State for Health, Jeremy Hunt, picked up the responsibility for mental health, which had previously been separated from the health portfolio. This resulted in barely a mention in the mainstream media and has not resulted in any perceptible changes in policy… yet.

The second piece of news was last week, and featured prominently in the Health Services Journal, but to my surprise seemed to make very little impact in the national news. Jeremy Hunt described children’s mental health services as “the biggest single area of weakness in NHS provision at present”. When you stop to consider the breadth and depth of challenges facing the NHS at present, to single out this oft overlooked area so starkly came as a surprise, albeit a welcome one.

Of course, bold statements are one thing and actions another, but there seemed to already be early seeds of policy initiatives creeping in to the detail of the statement, along with the suggestion that this was a particular area of concern for the Prime Minister Theresa May. The statement highlighted the need for early intervention for children with mental health problems and suggested closer working between Child and Adolescent Mental Health Services (CAMHS) and schools, as well as the challenges that exist within the 16-24 year old age group and the need to address this gap in service for particular conditions. Interestingly, some of these issues have also been brought to the fore in policy documents issued by the Clinton Presidential campaign in the United States.

All this bodes well for the Youth Mental Health theme of CLAHRC West Midlands. CLAHRC researchers though both this CLAHRC and the previous incarnation of CLAHRC Birmingham and Black Country have worked on a variety of projects whose research could help provide an evidence base for policy formulation. These include the redesign of youth mental health services to improve access; early intervention in first episode psychosis; the impact of schools on mental health (see also youthspace.me), and interventions within the 0-25 age range.

Professor Max Birchwood, Theme lead for the Youth Mental Health theme commented “It’s great to see this important area of health receiving national attention and mirroring many elements of the research undertaken by CLAHRC BBC and now CLAHRC WM. We look forward to playing an active role in contributing to the discussion and helping to shape future guidance and policy in this area”.

— Paul Bird, CLAHRC WM Head of Programme Delivery (Engagement)

Researchers Continue to Consistently Misinterpret p-values

For as long as there have been p-values there have been people misunderstanding p-values. Their nuanced definition eludes many researchers, statisticians included, and so they end up being misused and misinterpreted. The situation recently prompted the American Statistical Association (ASA)  to produce a statement on p-values.[1] Yet, they are still widely viewed as the most important bit of information in an empirical study, and careers are still built on ‘statistically significant’ findings. A paper in Management Science,[2] recently reported on Andrew Gelman’s blog,[3] reports the results of a number of surveys of top academics about their interpretations of the results of hypothetical studies. They show that these researchers, who include authors in the New England Journal of Medicine and American Economic Review, generally only consider whether the p-value is above or below 0.05; they consider p-values even when they are not relevant; they ignore the actual magnitude of an effect; and they use p-values to make inferences about the effect of an intervention on future subjects. Interestingly, the statistically untrained were less likely to make the same errors of judgement.

As the ASA statement and many, many other reports emphasise, p-values do not indicate the ‘truth’ of a result, nor do they imply clinical or economic significance, they are often presented for tests that are completely pointless, and they cannot be interpreted in isolation of all the other information about the statistical model and possible data analyses. It is possible that in the future the p-value will be relegated to a subsidiary statistic where it belongs rather than the main result, but until that time statistical education clearly needs to improve.

— Sam Watson, Research Fellow

References:

  1. Wasserstein RL & Lazar NA. The ASA’s Statement on p-Values: Context, Process, and Purpose. Am Stat. 2016; 70(2). [ePub].
  2. McShane BM & Gal D. Blinding Us to the Obvious? The Effect of Statistical Training on the Evaluation of Evidence. Manage Sci., 2015; 62(6): 1707-18.
  3. Gelman A. More evidence that even top researchers routinely misinterpret p-values. Statistical Modeling, Causal Inference, and Social Science. 26 July 2016.

Perception

Bias is something that affects us all; its all-pervasive nature means it influences everything we do from supermarket choices through to study design. But what of perception? Bias might lead the result of our study to be skewed or flawed, but if our perception of where the issue lies is incorrect we may select the wrong thing to study. So, how wrong can our perception be? Well, very, according to IPSOS MORI and their annual Perils of Perception report for 2015.[1]

This report polls members of the public in 33 countries on their understanding of key issues affecting their nation. The results show a significant gap between perception and reality across a number of issues that specifically relate to society and health in Great Britain.

Our perception of the distribution of wealth was one of the most distorted views. When asked what proportion of wealth the top 1% of the population own the guess was 59%, more than twice the true figure, which is 23%.

On immigration the perception of Britons is that 25% of the population are immigrants, nearly double the actual figure of 13%.

We also know we have an ageing population, but perhaps not to the extent we believe. The estimate of the average age of the population was 51 years old, when it is in fact 40.

With regard to obesity we may be complacent; the average estimate of the proportion of people over the age of 20 who are overweight or obese was 44% when it is in fact 62%.

And before you think that the Great British Public are better or worse than elsewhere, we are not. Ranked 16th of 33 countries in IPSOS MORI’s provocatively titled “Index of Ignorance” we are firmly in mid-table. If you are reading the blog from either Ireland or South Korea (ranked 27th and 28th) you potentially have a better perception of issues affecting your nation than if in Mexico, India and Brazil who occupy the top 3 positions. But this is not an issue that is delineated along boundaries of low-, middle- or high-income countries in case you were to infer that from the results: New Zealand is ranked at number 5 and Belgium at number 7.

So this is all good fun, interesting stuff, but what does it mean? Well certainly not that we should quietly reassure ourselves that we would have been much closer to the real figure than most of the population. Bias and perception issues are at their most insidious when we fail to acknowledge that we may be subject to them.

These findings are in fact an endorsement of the way, as CLAHRCs, we structure what we do. By bringing together academics, patients and those involved in delivering care, we challenge each others perceptions of the issues related to service delivery. That way we can work collaboratively to solve that issues that are in fact real issues, rather than those which we perceive to be the issue.

— Paul Bird, CLAHRC WM Head of Programme Delivery (Engagement)

Reference:

  1. Ipsos MORI. Perils of Perception 2015. 2015.

Do they think we’re stupid? The rise of statistical manipulitis and preventable measures

If there is one thing that the campaigns on the EU Referendum have taught us, it’s how the same set of data can be used to generate statistics that support two completely opposing points of view. This is beautifully illustrated in a report in the Guardian newspaper.[1] While the research community (amongst others) might accuse the campaigners of misleading the public and lament the journalists who sensationalise our findings, we are not immune from statistical manipulitus. To help control the susceptibility of researchers to statistical manipulitis, compulsory registration of trial protocols had to be instigated,[2] but five years later the majority of studies failed to do so, even registered trials where reporting results within one year of trial completion was mandated.[3] Furthermore, reporting alone provides insufficient public protection against the symptoms of statistical manipulitis. As highlighted in a previous blog, and one of Ben Goldacre’s Bad Science blogs,[4] researchers have been known to change primary endpoints, or select which endpoints to report. To provide a full aetiology for statistical manipulitis is beyond the scope of this blog, although Maslow’s belief that esteem (incorporating achievement, status, dominance and prestige) precedes self-actualisation (incorporating the realisation of one’s actual personal potential) provides an interesting starting point.[5] Whatever the causative mechanism, statistical manipulitis is not the only adverse consequence. For example, some professional athletes may stretch the principles underlying Therapeutic Use Exemptions to enable them to legally use substances on the World Anti-Doping Agency’s banned list, such as testosterone-based creams to treat saddle-soreness, when not all physicians would consider the athlete’s symptoms sufficiently severe to justify their use.[6]

We can also think of statistical manipulitis as pushing its victims across a balanced scale to the point at which the statistics presented become too contrived to be believed. Which side in the EU Referendum debate has travelled further from equilibrium is a moot point. While important gains could be had if those engaged with the debate knew the point at which the public’s scale is balanced, watching them succumb has injected some much-needed entertainment. The increased awareness of statistical manipulitis resulting from the debate has also provided an open door for those involved with public engagement with science to help move that tipping point and reduce the expected value of manipulation. To do so, the public need the tools and confidence to ask questions about political, scientific and other claims, as now being facilitated by the work of CLAHRC WM’s new PPIE Lead, Magdalena Skrybant, in her series entitled Method Matters. The first instalment, on regression to the mean, is featured in this blog.

Method Matters are ‘bite size’ explanations to help anyone without a degree in statistics or experience in research methods make sense of the numbers and claims that are bandied about in the media, using examples taken from real life written. Certainly, we would hope that through Method Matters, more people would be able to accurately diagnose any cases of statistical manipulitis and take relevant precautions.

Writing Method Matters is not an easy task: if each student in my maths class had rated my explanation of each topic, those ratings would vary both within and between students. My challenge was how to maximise the number of students leaving the class uttering those five golden words: “I get it now Miss!” Magdalena faces a tougher challenge – one size does not fit all and, unlike a “live” lesson, she cannot offer multiple explanations or answer questions in real time. However, while I had to convince 30 14-year-olds of the value of trigonometry on a windy Friday afternoon, the epidemic of statistical manipulitis highlighted by the EU Referendum debate has provided fertile ground for Method Matters. Please let us know what you think.

— Celia Taylor, Associate Professor

References:

  1. Duncan P, Gutiérrez P, Clarke S. Brexit: how can the same statistics be read so differently? The Guardian. 3 June 2016.
  2. Abbasi K. Compulsory registration of clinical trials. BMJ. 2004; 329: 637.
  3. Prayle AP, Hurley MN, Smyth AR. Compliance with mandatory reporting of clinical trial results on ClinicalTrials.gov: cross sectional study. BMJ. 2012; 344: d7373.
  4. Goldacre B. The data belongs to the patients who gave it to you. Bad Science. 2008.
  5. McLeod S. Maslow’s Hierarchy of Needs. Simply Psychology. 2007.
  6. Bassindale T. TUE – Therapeutic Use Exemptions or legitimised drug taking? We Are Forensic. 2014.

An Engine for Growth

The life sciences sector has been a growing and increasingly important part of the UK economy,[1] both as a marketplace and as a centre for product development and manufacturing. A recent report from Deloitte estimated that around 10% of global pharmaceutical research and development takes place in UK laboratories.[2] The NIHR across its wide infrastructure is ideally positioned at the cutting edge of development in healthcare to work in partnership with industry. As ever, at a strategic level this is easy to agree but how do we actually go about this? At an organisational level as a CLAHRC we need to look closely at what we do, and how we do it. We have done this over the last 12 months, engaging with a wide variety of our stakeholders and as a result formulated an industry engagement strategy and plan.

The initial implication is for what we do. There is a valid concern held at national level that we should be able to demonstrate efficiency and value for money by being able to offer assurance that we are not replicating existing services or functions. This is no more evident than in relation to industry engagement as there are multiple NHS and public sector bodies involved in providing an interface with small and medium sized enterprises (SMEs), as well as with multinationals. At CLAHRC WM we work in partnership with the West Midlands Academic Health Science Network, recognising their strengths in engaging with industry and allowing them to act as the first point of contact, for instance through their Meridian online innovation platform. In CLAHRC WM we focus our relatively limited resources on the areas most likely to deliver significant benefit. For this reason we do not typically work with industrialists on individual products. Rather, we consider interventions that are driven by technology and ask how the service can change to meet the need – the West Midlands went from the lowest to highest uptake of home haemodialysis, for example.[3] In recent News Blogs we considered precision medicine, and intra-cerebral embolectomy for thrombotic stroke. The CLAHRC WM Director has also produced a suite of supply-side health economic tools for use by industry.[4]

The CLAHRC WM has also significantly changed the way it approaches industry in the last 12 months. Firstly there is the Head of Programmes (engagement) post with specific remit to focus on NHS, AHSN and industry engagement and act as a single point of contact. Secondly, this post is part-based within the Institute for Translational Medicine run by Birmingham Health Partners. This unique development brings together organisations working on industry engagement that otherwise would have been remote from each other. This not only increases the interactions between these groups, but also helps to reduce the risk of duplication of services or functions.

The NIHR at 10 campaign has been a useful stimulus to bring all of the elements of the NIHR infrastructure together to look at industry engagement across the board. Whilst within CLAHRCs we are more concerned with service delivery, other parts of the NIHR infrastructure such as the Health Technology Assessment programme, and the Surgical Reconstruction and Microbiology Research Centre work closely with device and drug manufacturers. One of the great strengths from being part of the NIHR is that we can always learn from the other elements of the organisation which are more expert in these areas and inform our future approaches.

— Paul Bird, CLAHRC WM Head of Programme Delivery (Engagement)

References:

  1. HM Government. Life Science Competitiveness Indicators. BIS/15/249. 2015
  2. Deloitte. 2015 Life Sciences Outlook. 2015
  3. Combes G, Allen K, Sein K, Girling A, Lilford R. Taking hospital treatments home: a mixed methods case study looking at the barriers and success factors for home dialysis treatment and the influence of a target on uptake rates. Implement Sci. 2015; 10: 148.
  4. Girling A, Lilford R, Cole A, Young T. Headroom Approach to Device Development: Current and Future Directions. Int J Technol Assess Health Care. 2015; 31(5): 331-8.

Attracting, Developing and Retaining Research Leaders of the Future

Development of staff in all clinical and non-clinical professionals

We continue to develop the capacity of both clinical and non-clinical health and social care staff embedded in our partner organisations through our matched funded leadership fellowships. Following a training needs assessment exercise we developed a bespoke training package to address the knowledge and skills gaps of the leadership fellows (see above). Our most recent training event in this series, on 10 March 2016, focused on health informatics. It provided an introduction to the types of data that are available and how they can be used to underpin health services research (see also News Blog report here).

In addition to this generalisable training programme, the leadership fellows receive specialist support from the service themes and cross-cutting themes to which they are attached. This may be through day-to-day engagement with applied health research activities, attendance at specific training or research forums established by the theme or through one-to-one support. For example within our Maternity and Child Health theme a research midwives forum has been established by Dr Sara Kenyon who is NIHR Training Advocate for Midwifery.

We are working collaboratively with public health and social care services based within local authorities in the region. We have a number of leadership and diffusion fellows from local authority partners who attend our training seminars and a handful were awarded funding to complete part-time masters at University of Birmingham. Six fellows, two from Birmingham City Council and four from other healthcare partners, were funded under this scheme. The majority opted to complete the Masters in Public Health (MPH). All are achieving excellent academic results, with merit or distinction grades in assessments to date. We recently collected feedback from the fellows to see how we can further support their career development within or across partner organisations. Most have stated that they want to pursue a career within their current trust/local authority/organisation and that the additional qualification and support from CLAHRC will assist with promotion and career advancement.

Our Prevention and Detection of Diseases theme is collaborating with local authorities in Coventry and Warwickshire on a project to evaluate the ‘health checks’ programme. This project was the outcome of a successful training event to support the local implementation. Furthermore, this theme organised a sell-out, one-day ‘health screening master class’ that took place on 3 May 2016. The event was supported by the National Screening Committee and covered the definition of screening, availability of programmes available in UK, policy-making processes and the remit of the NSC (see here for more information). The training session was evaluated and analysis showed that understanding of screening programmes improved after the session.

Particular strengths of the training environment

The NIHR funded faculty are supported by multidisciplinary teams both at individual theme level and through the expertise and support from other themes bridging the Universities of Birmingham, Keele and Warwick. We provide opportunities for inter-CLAHRC collaboration through events such as workshops, training opportunities, away days and management meetings. This way of working has stimulated new collaborative projects, grants and papers, for example a paper recently published in Early Intervention in Psychiatry Journal demonstrated the collaboration between primary care case-finding experts from the Prevention and Detection of Diseases theme and early intervention in psychosis researchers from the Youth Mental Health theme to demonstrate a predictive model to identify early warning signs of depression in young people in primary care.[1]

Extending the academic capacity across a number of university campuses maximises our areas of expertise so creating an intellectually strong and dynamic training environment for both the NIHR funded and supported faculty and the leadership and diffusion fellows supported by matched funding. The Universities of Birmingham and Warwick currently provide academic placements for public health trainees and in the future placements may also be available at Keele University. Many of the trainees have been informally linked to the CLAHRC themes, mainly the Prevention and Detection of Diseases theme based at both Birmingham and Warwick. We plan to formalise these opportunities, as CLAHRC offers a productive and highly relevant learning environment for this specialist group.

We have recently formalised the link with our host Trust’s (UHBFT) postgraduate training programme (Annex U) with a number of students undertaking specific CLAHRC projects as part of their dissertation. For example, one health economics student is working with our Chronic Diseases theme and a geriatrician at UHBFT to evaluate a service designed to prevent the admission to hospital for frail elderly patients. We have recently supported a successful application, led by UHBFT, to deliver the pre-Masters Clinical Academic Internship Programmes (CAIP) and Masters to Doctorate Bridging Programmes and continue to collaborate with CAIP to deliver our respective training objectives.

We have developed two specific masters programmes, one at Birmingham (MSc Health Research Methods) and one at Warwick Business School (MSc in Healthcare Innovation & Leadership). The MSc in Health Research Methods at Birmingham will receive its first students in September 2016 and CLAHRC faculty will receive a discount on tuition fees (course page). A MOOC is being developed as a precursor to the MSc in Healthcare Innovation and Leadership at Warwick Business School and it is anticipated that these will launch in early 2017. CLAHRC researchers will be invited to provide some of the content for the above formal courses to showcase case studies from empirical applied health research investigations.

Our approach to ensure that research student/support staff receive a high quality development experience

Postgraduate students are embedded within our themes and are supported by the multidisciplinary academic environment provided by the CLAHRC collaboration. A training plan for 2016 was agreed with the postgraduate faculty, following an event held on 19 November 2015 to explore career opportunities and consider how CLAHRC could further support a shared learning experience (read also News Blog report here). Additional learning objectives identified by the group included ethics / governance, PPI and collaboration/engagement for successful applied health research. The first of these graduate tutorials, setting up research in the NHS: ethical and practical considerations, was held in February 2016 and included external speakers from the Health Authority Agency (HAA), West Midlands CRN, South Birmingham Research Ethics Committee and ethicist from University of Birmingham (read also News Blog report here).

A Warwick-based student, Jennifer Cooper, has been successful in her application to the NIHR Infrastructure Doctoral Exchange Scheme. She will undertake a placement at the University of Birmingham, supervised by Professor Tom Marshall, to gain technical primary care database skills and will explore the use of routinely recorded data from electronic GP records (THIN database) to improve colorectal cancer screening and referral. Amy Grove, the first successful exchange student completed her placement at CLAHRC Yorkshire & Humber in summer 2015. Amy was embedded in the Translating Knowledge into Action theme where she gleaned some practical approaches to knowledge mobilisation and is working collaboratively on two papers; one to be submitted to Implementation Science and a further paper to Social Science and Medicine.

As described above, we support a number of our faculty with NIHR fellowship applications. Collectively, we already hold a number of NIHR fellowships and one professorship and have recently supported further fellowship applications for round 9 of the scheme, which closed in January 2016. We are supporting several more in their applications to the NIHR Knowledge Mobilisation Fellowship and we currently support two NIHR Training Advocates – one for Midwifery (Dr Sara Kenyon, University of Birmingham) and one for Physiotherapy (Prof Nadine Foster, Keele University).

Nathalie Maillard is the nominated training lead for the CLAHRC West Midlands and she was featured in the August 2015 edition of the NIHR faculty world magazine.

— Nathalie Maillard, CLAHRC WM Head of Programme Delivery

— Tom Marshall, CLAHRC WM Co-Director

Reference:

  1. Nicholas L, Ryan R, Connor C, Birchwood M, Marshall T. Derivation of a prediction model for a diagnosis of depression in young adults: a matched case-control study using electronic primary care records. Early Interv Psychiatry. 2016. [ePub].

 

Public and the Patients Making a Difference to World-Class Research

“People-focused research in the NHS simply cannot be delivered without the involvement of patients and the public. No matter how complicated the research or how brilliant the researcher, patients and the public always offer unique, invaluable insights.” (Professor Dame Sally Davies)

The NIHR, under the leadership of Professor Dame Sally Davies, has championed patient and public involvement, engagement and participation. The NIHR aims to improve the health and wealth of the nation through world-class research, and strong and meaningful patient and public involvement is integral to this.

The tenth anniversary celebrations for the NIHR present a valuable opportunity to reflect on how patients and the public make a difference to research. Whilst great steps have been taken to ensuring that patients and the public are involved, participate and engage with research, the journey to achieving a meaningful partnership between patients, the public and researchers is a long one, with obstacles still to be overcome.

In order to take stock of the progress already made with regard to patient and public involvement, engagement and participation, the NIHR commissioned Simon Denegri, Chair of INVOLVE and the NIHR National Director for Patients and the Public, to convene the ‘Breaking Boundaries Review Panel’. The final report, ‘Going the Extra Mile’, was published nine months later, setting out a clear vision for the direction of patient and public involvement, participation and engagement. The strategy is clear:
“Within the NIHR, such is the extent to which the public have become involved that research is increasingly becoming a joint venture between patients and the public, researchers, clinicians and health professionals. If we are to meet the health and social challenges of the future then these partners must be empowered, encouraged and supported to work even closer together.” (Breaking Boundaries, p.8)

Part of this vision is ensuring that patient and public involvement and engagement is meaningful and that developing close relations with patients and the public is second nature to the research community. Patients and the public can be involved at all stages of the research cycle, and by involving and engaging with patients and the public, researchers can ensure that research is relevant, acceptable and appropriate.

From the outset, CLAHRC West Midlands has demonstrated a clear commitment to working in partnership with patients and the public. Our PPI Advisors are represented on each of CLAHRC WM’s themes and the patient and public voice is heard on Steering and Executive Committee level through representatives elected by CLAHRC WM’s Advisors. The PPI Advisors have their own Advisory group, which has developed its own Terms of Reference, and the Advisory group meetings are a useful forum to exchange ideas and share good practice. CLAHRC WM is constantly exploring new ways of involving and engaging with patients and the public: this very news blog now has a dedicated ‘PPI Section’ and the website has been developed with PPI Advisors to make it more accessible. In particular, our PPI representatives are selected at competitive interview. Wherever possible we appoint representatives who also advise the NHS in carrying out its statutory obligation to consult on service change. In this way we seek to line up service change and research – our CLAHRC is driven by service change, so it makes little sense to separate the patients and public who advise on the service from those who would advise on the research – the service change and the research are integrated so the advice should also be integrated.

Having strong patient and public involvement and engagement embedded in each of its themes and present at all organisational levels helps CLAHRC West Midlands to produce world-class research. CLARHC WM’s projects demonstrate the different ways patients and the public can work in partnership with researchers at all stages of the research cycle. From working with researchers before a project even starts to ensure that the right questions are being asked right through to helping disseminate findings to wider audiences when projects finish: patients and the public are involved in all stages of the research cycle.

CLAHRC West Midlands is committed to sharing its knowledge and experience about patient and public involvement through regional and national networks (such as PILAR) and by publishing examples of how researchers have worked meaningfully with patients and the public to achieve better outcomes. But although CLAHRC WM is already demonstrates areas of good practice in working in partnership with patients and the public, it’s important not to rest on our laurels. CLAHRC WM should explore new ways of ensuring meaningful participation, engagement and involvement with patients and the public. CLAHRC WM should make sure that it makes best use of the ‘added value’ patients and the public can bring to research projects and should also seek to overcome some of the barriers to achieving meaningful patient and public involvement and engagement, and be creative and innovative in its approach.

Tennis player Arthur Ashe stated: “Start where you are. Use what you have. Do what you can.” PPI in CLAHRC WM is built on strong foundations and we have some excellent resources to draw upon. We should now do ‘whatever we can’ to ensure patients and the public continue to make a real difference to our world-class research.

— Magdalena Skrybant, PPIE Lead