Tag Archives: Guest blog

Cognitive Bias Modification for Addictive Behaviours

It can be difficult to change health behaviours. Good intentions to quit smoking or drink less alcohol, for example, do not always translate into action – or, if they do, the change doesn’t last very long. A meta-analysis of meta-analyses suggests that intentions explain, at best, a third of the variation in actual behaviour change.[1] [2] What else can be done?

One approach is to move from intentions to inattention. Quite automatically, people who regularly engage in a behaviour like smoking or drinking alcohol pay more attention to smoking and alcohol-related stimuli. To interrupt this process ‘cognitive bias modification’ (CBM) can be used.

Amongst academics, the results of CBM have been called “striking” (p. 464),[3] prompted questions about how such a light-touch intervention can have such strong effects (p. 495),[4] and led to the development of online CBM platforms.[5]

An example of a CBM task for heavy alcohol drinkers is using a joystick to ‘push away’ pictures of beer and wine and ‘pull in’ pictures of non-alcoholic soft drinks. Alcoholic in-patients who received just an hour of this type of CBM showed a 13% lower rate of relapse a year later than those who did not – 50/108 patients in the experimental group and 63/106 patients in the control group.[4]

Debate about the efficacy of CBM is ongoing. It appears that CBM is more effective when administered in clinical settings rather than in a lab experiment or online.[6]

— Laura Kudrna, Research Fellow

References:

  1. Sheeran P. Intention-behaviour relations: A conceptual and empirical review. In: Stroebe W, Hewstone M (Eds.). European review of social psychology, (Vol. 12, pp. 1–36). London: Wiley; 2002.
  2. Webb TL Sheeran P. Does changing behavioral intentions engender behavior change? A meta-analysis of the experimental evidence. Psychol Bull. 2006; 132(2): 249.
  3. Sheeran P, Gollwitzer PM, Bargh JA. Nonconscious processes and health. Health Psychol. 2013; 32(5): 460.
  4. Wiers RW, Eberl C, Rinck M, Becker ES, Lindenmeyer J. Retraining automatic action tendencies changes alcoholic patients’ approach bias for alcohol and improves treatment outcome. Psychol Sci. 2011; 22(4): 490-7.
  5. London School of Economics and Political Science. New brain-training tool to help people cut drinking. 18 May 2016.
  6. Wiers RW, Boffo M, Field M. What’s in a trial? On the importance of distinguishing between experimental lab studies and randomized controlled trials: The case of cognitive bias modification and alcohol use disorders. J Stud Alcohol Drugs. 2018; 79(3): 333-43.
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Giving Feedback to Patient and Public Advisors: New Guidance for Researchers

Whenever we are asked for our opinion we expect to be thanked and we also like to know if what we have contributed has been useful. If a statistician/qualitative researcher/health economist has contributed to a project, they would (rightfully) expect some acknowledgement and whether their input had been incorporated. As patient and public contributors are key members of the research team, providing valuable insights that shape research design and deliver, it’s right to assume that they should also receive feedback on their contributions. But a recent study led by Dr Elspeth Mathie (CLAHRC East of England) found that routine feedback to PPI contributors is the exception rather than the rule. The mixed methods study (questionnaire and semi-structured interviews) found that feedback was given in a variety of formats with variable satisfaction with feedback. A key finding was that nearly 1 in 5 patient and public contributors (19%) reported never having received feedback for their involvement.[1]

How should feedback be given to public contributors?

There should be no ‘one size fits all’ approach to providing feedback to public contributors. The study recommends early conversations between researchers and public contributors to determine what kind of feedback should be given to contributors and when. The role of a Public and Patient Lead can help to facilitate these discussions and ensure feedback is given and received throughout a research project. Three main categories of feedback were identified:

  • Acknowledgement of contributions – Whether input was received and saying ‘thanks’
  • Information about the impact of contributions – Whether input was useful and how it was incorporated into the project;
  • Study success and progress – Information on whether a project was successful (e.g. securing grant funding/gaining ethical approval) and detail about how the project is progressing.

 

What are the benefits to providing feedback for public contributors?

The study also explored benefits of giving feedback to contributors. Feedback can:

  • Increase motivation for public contributors to be involved in future research projects;
  • Help improve a contributor’s input into future project (if they know what has been useful, they can provide more of the same);
  • Build the public contributor’s confidence;
  • Help the researcher reflect on public involvement and the impact it has on research.

 

What does good feedback look like?

Researchers, PPI Leads and public contributors involved in the feedback study have co-produced Guidance for Researchers on providing feedback for public contributors to research.[2] The guidance explores the following:

  • Who gives feedback?
  • Why is PPI feedback important?
  • When to include PPI feedback in research cycle?
  • What type of feedback?
  • How to give feedback?

Many patient and public contributors get involved in research to ‘make a difference’. This Guidance will hopefully help ensure that all contributors learn how their contributions have made a difference and will also inspire them to continue to provide input to future research projects.

— Magdalena Skrybant, PPIE Lead

References:

  1. Mathie E, Wythe H, Munday D, et al. Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study. Health Expect. 2018.
  2. Centre for Research in Public Health and Community Care. Guidance for Researchers: Feedback. 2018

Effective Collaboration between Academics and Practitioners Facilitates Research Uptake in Practice

New research has been conducted by Eivor Oborn, Professor of Entrepreneurship & Innovation at Warwick Business School and Michael Barrett, Professor of  Information Systems & Innovation Studies at Cambridge Judge Business School, to better understand the contribution of collaboration in bridging the gap between research and its uptake in to practice (Inform Organ. 2018; 28[1]: 44-51).

Much has been written on the role of knowledge exchange to bridge the academic-practitioner divide. The common view Is that academics ‘talk funny’, using specialised language, which often leads to the practical take home messages being missed or ‘lost in translation’. The challenge for academics is to learn how to connect ‘theory or evidence driven’ knowledge with practitioners’ knowledge to ‘give sense’ and enable new insights to form.

The research examines four strategies by which academics may leverage their expertise in collaborative relationships with practitioners to realise, what the authors term: ‘Research Impact and Contributions to Knowledge’ (RICK).

  1. Maintain critical distance
    Academics may adopt a strategy of maintaining critical distance in how they engage in academic-practitioner relations for a variety of reasons, for example, to retain control of the subject of investigation.
  2. Prompt deeper engagementAcademics who are immersed in one domain, become fluent in a new language and gain practical expertise in this second (practical) domain. For example, in the Warwick-led NIHR CLAHRC West Midlands, academics are embedded and work closely with their NHS counterparts. This provides academics with knowledge -sharing and -transfer opportunities, enabling them to better respond to the knowledge requirements of the health service, and in some scenarios, co-design research studies, and catalyse upon opportunities to promote the use of evidence from their research activities.
  3. Develop prescience
    Prescience describes a process of anticipating what we need to know – almost akin to ‘horizon-scanning’. A strategy of prescience would aim to anticipate, conceptualize, and influence significant problems that might arise in domains over time. The WBS-led Enterprise Research Centre employs this strategy and seeks to answer one central question: ‘what drives SME growth?’
  4. Achieve hybrid practices
    Engaged scholarship allows academics to expand their networks and collaboration with other domains and in doing so generate an entirely new field of ‘hybrid’ practices.

The research examines how the utility (such as practical or scientific usefulness) of contributions in academic-practitioner collaboration can be maximised. It calls for established journals to support a new genre of articles that involve engaged scholarship, produced by multidisciplinary teams of academic, practitioners and policymakers.

The research is published in Information & Organization journal, together with a collection of articles on Research Impact and Contributions to Knowledge (RICK) – a framework coined by co-author on the above research, Prof Michael Barrett.

— Nathalie Maillard, WBS Impact Officer

New Framework to Guide the Evaluation of Technology-Supported Services

Heath and care providers are looking to digital technologies to enhance care provision and fill gaps where resource is limited. There is a very large body of research on their use, brought together in reviews, which among many others, include, establishing effectiveness in behaviour change for smoking cessation and encouraging adherence to ART,[1] demonstrating improved utilisation of maternal and child health services in low- and middle-income countries,[2] and delineating the potential for improvement in access to health care for marginalised groups.[3] Frameworks to guide health and care providers when considering the use of digital technologies are also numerous. Mehl and Labrique’s framework aims to help a low- or middle-income country consider how they can use digital mobile health innovation to help succeed in the ambition to achieving universal health coverage.[4] The framework tells us what is somewhat obvious, but by bringing it together it provides a powerful tool for thinking, planning, and countering pressure from interest groups with other ambitions. The ARCHIE framework developed by Greenhalgh, et al.[5] is a similar tool but for people with the ambition of using telehealth and telecare to improve the daily lives of individuals living with health problems. It sets out principles for people developing, implementing, and supporting telehealth and telecare systems so they are more likely to work. It is a framework that, again, can be used to counter pressure from interest groups more interested in the product than the impact of the product on people and the health and care service. Greenhalgh and team have now produced a further framework that is very timely as it provides us with a tool for thinking through the potential for scale-up and sustainability of health and care technologies.[6]

Greenhalgh, et al. reviewed 28 previously published technology implementation frameworks in order to develop their framework, and use their own studies of digital assistive technologies to test the framework. Like the other frameworks this provides health and care providers with a powerful tool for thinking, planning and resisting. The Domains in the Framework include, among others, the health condition, the technology, the adopter system (staff, patients, carers), the organisation, and the Domain of time – how the technology embeds and is adapted over time. For each Domain in the Framework the question is asked whether it is simple, complicated or complex in relation to scale-up and sustainability of the technology. For example, the nature of the condition: is it well understood and predictable (simple), or poorly understood and unpredictable (complex)? Asking this question for each Domain allows us to avoid the pitfall of thinking something is simple when it is in reality complex. For example, there may be a lot of variability in the health condition between patients, but the technology may have been designed with a simplified textbook notion of the condition in mind. I suggest that even where clinicians are involved in the design of interventions, it is easy for them to forget how often they see patients that are not like the textbook, as they, almost without thinking, deploy their skills to adapt treatment and management to the particular patient. Greenhalgh, et al. cautiously conclude that “it is complexity in multiple domains that poses the greatest challenge to scale-up, spread and sustainability”. They provide examples where unrecognised complexity stops in its tracks the use of a technology.

— Frances Griffiths, Professor of Medicine in Society

References:

  1. Free C, Phillips G, Galli L. The effectiveness of mobile-health technology-based health behaviour change or disease management interventions for health care consumers: a systematic review. PLoS Med. 2013;10:e1001362.
  2. Sondaal SFV, Browne JL, Amoakoh-Coleman M, Borgstein A, Miltenburg AS, Verwijs M, et al. Assessing the Effect of mHealth Interventions in Improving Maternal and Neonatal Care in Low- and Middle-Income Countries: A Systematic Review. PLoS One. 2016;11(5):e0154664.
  3. Huxley CJ, Atherton H, Watkins JA, Griffiths F. Digital communication between clinician and patient and the impact on marginalised groups: a realist review in general practice. Br J Gen Pract. 2015;65(641):e813-21.
  4. Mehl G, Labrique A. Prioritising integrated mHealth strategies for universal health coverage. Science. 2014;345:1284.
  5. Greenhalgh T, Procter R, Wherton J, Sugarhood P, Hinder S, Rouncefield M. What is quality in assisted living technology? The ARCHIE framework for effective telehealth and telecare services. BMC Medicine. 2015;13(1):91.
  6. Greenhalgh T, Wherton J, Papoutsi C, Lynch J, Hughes G, A’Court C, et al. Beyond Adoption: A New Framework for Theorizing and Evaluating Nonadoption, Abandonment, and Challenges to the Scale-Up, Spread, and Sustainability of Health and Care Technologies. J Med Internet Res. 2017;19(11):e367.

Patient’s experience of hospital care at weekends

The “weekend effect”, whereby patients admitted to hospitals during weekends appear to be associated with higher mortality compared with patients who are admitted during weekdays, has received substantial attention from the health service community and the general public alike.[1] Evidence of the weekend effect was used to support the introduction of ‘7-day Service’ policy and associated changes to junior doctor’s contracting arrangement by the NHS,[2-4] which have further propelled debates surrounding the nature and causes of the weekend effect.

Members of the CLAHRC West Midlands are closely involved in the HiSLAC project,[5] which is an NIHR HS&DR Programme funded project led by Professor Julian Bion (University of Birmingham) to evaluate the impact of introducing 7-day consultant-led acute medical services. We are undertaking a systematic review of the weekend effect as part of the project,[6] and one of our challenges is to catch up with the rapidly growing literature fuelled by the public and political attention. Despite that hundreds of papers on this topic have been published, there has been a distinct gap in the academic literature – most of the published papers focus on comparing hospital mortality rates between weekends and weekdays, but virtually no study have compared quantitatively the experience and satisfaction of patients between weekends and weekdays. This was the case until we found a study recently published by Chris Graham of the Picker Institute, who has unique access to data not in the public domain, i.e. the dates of admission to hospital given by the respondents.[7]

This interesting study examined data from two nationwide surveys of acute hospitals in 2014 in England: the A&E department patient survey (with 39,320 respondents representing a 34% response rate) and the adult inpatient survey (with 59,083 respondents representing a 47% response rate). Patients admitted at weekends were less likely to respond compared to those admitted during weekdays, but this was accounted for by patient and admission characteristics (e.g. age groups). Contrary to the inference that would be made on care quality based on hospital mortality rates, respondents attending hospital A&E department during weekends actually reported better experiences with regard to ‘doctors and nurses’ and ‘care and treatment’ compared with those attending during weekdays. Patients who were admitted to hospital through A&E during weekends also rated information given to them in the A&E more favourably. No other significant differences in the reported patient experiences were observed between weekend and weekday A&E visits and hospital admissions. [7]

As always, some cautions are needed when interpreting these intriguing findings. First, as the author acknowledged, patients who died following the A&E visits/admissions were excluded from the surveys, and therefore their experiences were not captured. Second, although potential differences in case mix including age, sex, urgency of admission (elective or not), requirement of a proxy for completing the surveys and presence of long-term conditions were taken into account in the aforementioned findings, the statistical adjustment did not include important factors such as main diagnosis and disease severity which could confound patient experience. Readers may doubt whether these factors could overturn the finding. In that case the mechanisms by which weekend admission may lead to improved satisfaction Is unclear. It is possible that patients have different expectations in terms of hospital care that they receive by day of the week and consequently may rate the same level of care differently. The findings from this study are certainly a very valuable addition to the growing literature that starts to unfold the complexity behind the weekend effect, and are a further testament that measuring care quality based on mortality rates alone is unreliable and certainly insufficient, a point that has long been highlighted by the Director of the CLAHRC West Midlands and other colleagues.[8] [9] Our HiSLAC project continues to collect and examine qualitative,[10] quantitative,[5] [6] and economic [11] evidence related to this topic, so watch the space!

— Yen-Fu Chen, Principal Research Fellow

References:

  1. Lilford RJ, Chen YF. The ubiquitous weekend effect: moving past proving it exists to clarifying what causes it. BMJ Qual Saf 2015;24(8):480-2.
  2. House of Commons. Oral answers to questions: Health. 2015. House of Commons, London.
  3. McKee M. The weekend effect: now you see it, now you don’t. BMJ 2016;353:i2750.
  4. NHS England. Seven day hospital services: the clinical case. 2017.
  5. Bion J, Aldridge CP, Girling A, et al. Two-epoch cross-sectional case record review protocol comparing quality of care of hospital emergency admissions at weekends versus weekdays. BMJ Open 2017;7:e018747.
  6. Chen YF, Boyal A, Sutton E, et al. The magnitude and mechanisms of the weekend effect in hospital admissions: A protocol for a mixed methods review incorporating a systematic review and framework synthesis. Systems Review 2016;5:84.
  7. Graham C. People’s experiences of hospital care on the weekend: secondary analysis of data from two national patient surveys. BMJ Qual Saf 2017;29:29.
  8. Girling AJ, Hofer TP, Wu J, et al. Case-mix adjusted hospital mortality is a poor proxy for preventable mortality: a modelling study. BMJ Qual Saf 2012;21(12):1052-56.
  9. Lilford R, Pronovost P. Using hospital mortality rates to judge hospital performance: a bad idea that just won’t go away. BMJ 2010;340:c2016.
  10. Tarrant C, Sutton E, Angell E, Aldridge CP, Boyal A, Bion J. The ‘weekend effect’ in acute medicine: a protocol for a team-based ethnography of weekend care for medical patients in acute hospital settings. BMJ Open 2017;7: e016755.
  11. Watson SI, Chen YF, Bion JF, Aldridge CP, Girling A, Lilford RJ. Protocol for the health economic evaluation of increasing the weekend specialist to patient ratio in hospitals in England. BMJ Open 2018:In press.

The reliability of ethical review committees

I recently submitted the same application for ethical review for a multi-country study to three ethical review panels, two of which were overseas and one in the UK. The three panels together raised 19 points to be addressed before full approval could be given. Of these 19 points, just one was raised by two committees and none was raised by all three. Given CLAHRC WM’s methodological interest in inter-rater reliability and my own interests in the selection and assessment of health care students and workers, I was left pondering a) whether different ethical review committees consistently have different pass/fail thresholds for different ethical components of a proposed research study; and b) whether others have had similar experiences (we would welcome any examples of either convergent or divergent decisions by different ethical review committees).

Let me explain with two examples. One point raised was the need for formal written client consent during observations of Community Health Workers’ day-to-day activities. We had argued that because the field worker would only be observing the actions of the Community Health Worker and not the client, then formal written client consent was not required, but that informal verbal consent would be requested and the field worker would withdraw if the client did not wish them to be present. The two overseas committees both required formal written client consent, but the UK committee was happy with our justification for not doing so. On the other hand, the UK committee did not think we had provided sufficient reassurance of how we would protect the health and safety of the field worker as they conducted the observations, which could involve travelling alone into remote rural communities. The two overseas committees, however, considered our original plans for ensuring field worker health and safety sufficient.

What are the potential implications if different ethical review committees have different “passing standards”? As with pass/fail decisions in selection and assessment, there could be false positives or false negatives if studies are reviewed by “dove-ish” or “hawk-ish” committees respectively. As with selection and assessment, a false positive is probably the most concerning of the two: a study is given ethical clearance when ethical issues that would concern most other committees have not been raised and addressed. Although it is probably very rare that a study never gets ethical approval, a false negative decision would mean that the research team is required to make potentially costly and time-consuming amendments that most other committees would consider excessive. I have no experience on the “other side” of an ethical review committee, but I expect there must be some consideration of balancing the need for the research findings against potential ethical risks to participants and the research team.

Two interesting research questions arise. The first is to examine how ethical review committees make their decisions and set passing standards for research studies. A study of this nature in undergraduate medical education is currently ongoing: Peter Yates at Keele University is qualitatively examining how medical schools set their standards for finals examinations. The second is to explore the extent of the difference in passing standards across ethical review committees, by asking a sample of committees to each review a set of identical applications and to compare their decisions. A similar study in undergraduate medical education investigated differences in passing standards for written finals examinations across UK medical schools.[1] To avoid significant bias due to the Hawthorne effect, the ethical review committees would really need to be unaware that they were the subjects of such research. This, of course, raises a significant ethical dilemma with respect to informed consent and deception. Therefore it is not known whether such a study would be given ethical approval (and if so, by which committees?).

— Celia Taylor, Associate Professor

Reference:

  1. Taylor CA, Gurnell M, Melville CR, Kluth DC, Johnson N, Wass V. Variation in passing standards for graduation‐level knowledge items at UK medical schools. Med Educ. 2017; 51(6): 612-20.

Fair is Fair: Preventing the Misuse of Visiting Hours to Reduce Inequities

The experience of healthcare as a social activity feels very different when viewed from the perspectives of the patient, their relatives, or the healthcare staff. The patient is the centre of attention, but profoundly dependent; the relatives are independent, but unempowered and on foreign ground; and the staff are on home territory and authoritative. These unequal relationships come into sharp focus in the emotionally charged context of critical illness and the Intensive Care Unit. Which of us would not want our family to be near to us and supported by the staff in such a situation? And yet surveys repeatedly show that there is wide variation between countries in national policies, that restrictive visiting is common in practice, and that there is wide variation between ICUs in how those policies are applied.[1-3] Why should this be so?

When patients are asked, they express a strong preference to be visited by their relatives.[4] Involvement of relatives in their loved one’s care has been linked to improved outcomes in a number of conditions, including stroke.[5] [6] However, nursing staff attitudes to visiting [7] reveal concerns about the additional workload involved in caring for and communicating with relatives, and that their presence by the bedside might impede delivery of care, adversely affect infection control, or result in exhaustion of family members. Deeper enquiry might well reveal a lack of empathy and professional confidence: anxiety about being constantly observed by family members, or that lapses in care might result in criticism.

Netzer and Iwashyna take a social justice perspective to argue that this is wrong, and that ICUs should implement current national best practice guidance by making open visiting for families the default,[8] thereby avoiding selection bias in permitting or restricting access. The authors argue that excluding families from their relative’s care can impact negatively on both the patient and relative. The visiting hours offered to relatives may be misaligned with their working hours, creating a further obstacle for those with less flexibility and support from their employer, especially in a society where zero hour contracts are more common.

Moreover, staff discretion to vary these restrictions creates opportunities for conscious or unconscious selection bias. The authors describe a personal experience in which visiting hours reinforced the racial inequalities seen in US healthcare. Such biases might also affect other minorities such as same-sex couples, or transgender communities. Training in equality and diversity organised by NHS Trusts might minimise conscious bias, but the fact remains that while restricted visiting is the default, discretion increases the opportunity for social discrimination.

In considering an open visiting policy, attention must be paid to the potential negatives this may pose. Organisations will be conscious of staff limitations and resources, and the potential for abusive/disruptive family members. Ethnic minority or migrant families bring with them different cultural norms and behaviours which may impact adversely on the family members of indigenous patients. Implementation of open visiting would need to include contingencies to cope with such events as they occur, an example being training staff to have the necessary skills and behaviours to deal with such situations. We are working on this as part of the HS&DR-funded PEARL Project (Patient Experience And Reflective Learning), which also includes interventions designed to maximise empathy.[9] Ultimately, the level of involvement of relatives in their family members’ care should be a decision made by the patient and the family and supported by professionally confident and compassionate staff.

— Olivia Brookes, PEARL Project Manager;
— Prof Julian Bion, PEARL Chief Investigator, Professor of Intensive Care Medicine

References:

  1. Liu V, Read JL, Scruth E, Cheng E. Visitation policies and practices in US ICUs. Crit Care. 2013; 17(2):R71.
  2. Giannini A, Miccinesi G, Leoncino S. Visiting policies in Italian intensive care units: a nationwide survey. Intensive Care Med. 2008; 34(7):1256-62.
  3. Greisen G, Mirante N, Haumont D, Pierrat V, Pallás-Alonso CR, Warren I, Smit BJ, Westrup B, Sizun J, Maraschini A, Cuttini M; ESF Network. Parents, siblings and grandparents in the Neonatal Intensive Care Unit. A survey of policies in eight European countries. Acta Paediatr. 2009 Nov;98(11):1744-50.
  4. Wu C, Melnikow J, Dinh T, Holmes JF, Gaona SD, Bottyan T, Paterniti D, Nishijima DK. Patient Admission Preferences and Perceptions. West J Emerg Med. 2015; 16(5):707-14.
  5. Inouye SK, Bogardus ST, Jr., Charpentier PA, et al. A multicomponent intervention to prevent delirium in hospitalized older patients. New Engl J Med. 1999; 340(9):669-76.
  6. Tsouna-Hadjis E, Vemmos KN, Zakopoulos N, Stamatelopoulos S. First-stroke recovery process: the role of family social support. Arch Phys Med Rehabil. 2000; 81(7): 881-7.
  7. Berti D, Ferdinande P, Moons P. Beliefs and attitudes of intensive care nurses toward visits and open visiting policy. Intensive Care Med. 2007; 33(6): 1060-5.
  8. Netzer G, Iwashyna TJ. Fair is Fair: Preventing the Misuse of Visiting Hours to Reduce Inequities. Ann Am Thorac Soc. 2017.
  9. Teding van Berkhout E, Malouff JM. The efficacy of empathy training: A meta-analysis of randomized controlled trials. J Couns Psychol. 2016; 63(1):32-41.

‘Information is not knowledge’: Communication of Scientific Evidence and how it can help us make the right decisions

Every one of us is required to make many decisions: from small decisions, such as what shoes to wear with an outfit or whether to have a second slice of cake; to larger decisions, such as whether to apply for a new job or what school to send our children to. For decisions where the outcome can have a large impact we don’t want to play a game of ‘blind man’s buff’ and make a decision at random. We do our utmost to ensure that whatever decision we arrive at, it is the right one. We go through a process of getting hold of information from a variety of sources we trust and processing that knowledge to help us make up our minds. And in this digital age, we have access to more information than ever before.

When it comes to our health, we are often invited to be involved in making shared decisions about our own care as patients. Because it’s our health that’s at stake, this can bring pressures of not only making a decision but also making the right decision. Arriving at a wrong decision can have significant consequences, such as over- or under-medication or missing out from advances in medicine. But how do we know how to make those decisions and where do we get our information from? Before we start taking a new course of medication, for example, how can we find out if the drugs are safe and effective, and how can we find out the risks as well as the benefits?

The Academy of Medical Sciences produced a report, ‘Enhancing the use of scientific evidence to judge the potential benefits and harms of medicine’,[1] which examines what changes would be necessary to help patients make better-informed decisions about taking medication. It is often the case that there is robust scientific evidence that can be useful in helping patients and clinicians make the right choices. However, this information can be difficult to find, hard to understand, and cast adrift in a sea of poor-quality or misleading information. With so much information available, some of it conflicting – is it any surprise that in a Medical Information Survey, almost two-thirds of British adults would trust experiences of friends and family compared to data from clinical trials, which only 37% of British adults would trust?[2]

The report offers recommendations on how scientific evidence can be made available to enable people to weigh up the pros and cons of new medications and arrive at a decision they are comfortable with. These recommendations include: using NHS Choices as a ‘go to’ hub of clear, up-to-date information about medications, with information about benefits and risks that is easy to understand; improving the design, layout and content of patient information leaflets; giving patients longer appointment times so they can have more detailed discussions about medications with their GP; and a traffic-light system to be used by the media to endorse the reliability of scientific evidence.

This is all good news for anyone having to decide whether to start taking a new drug. I would welcome the facility of going to a well-designed website with clear information about the risks and benefits of taking particular drugs rather than my current approach of asking friends and family (most of whom aren’t medically trained), searching online, and reading drug information leaflets that primarily present long lists of side-effects.

Surely this call for clear, accessible information about scientific evidence is just as relevant to all areas of medical research, including applied health. Patients and the public have a right to know how scientific evidence underpinning important decisions in care is generated and to be able to understand that information. Not only do patients and the public also make decisions about aspects of their care, such as whether to give birth at home or in hospital, or whether to take a day off work to attend a health check, but they should also be able to find and understand evidence that explains why care is delivered in a particular way, such as why many GPs now use a telephone triage system before booking in-person appointments. Researchers, clinicians, patients and communicators of research all have a part to play.

In CLAHRC West Midlands, we’re trying to ‘do our bit’. We aim to make accessible a sound body of scientific knowledge through different information channels and our efforts include:

  • Involving patients and the public to write lay summaries of our research projects on our website so people can find out about the research we do.
  • Communication of research evidence in accessible formats, such as CLAHRC BITEs, which are reviewed by our Public Advisors.
  • Method Matters, a series aimed to give members of the public a better understanding of concepts in Applied Health Research.

The recommendations from the Academy of Medical Sciences can provide a useful starting point for further discussions on how we can communicate effectively in applied health research and ensure that scientific evidence, rather than media hype or incomplete or incorrect information, is the basis for decision-making.

— Magdalena Skrybant, CLAHRC WM PPIE Lead

References:

  1. The Academy of Medical Sciences. Enhancing the use of scientific evidence to judge the potential benefits and harms of medicine. London: Academy of Medical Sciences; 2017.
  2. The Academy of Medical Sciences. Academy of Medical Sciences: Medical Information Survey. London: Academy of Medical Sciences; 2016

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