By , on 11 October 2018
For the last few years we have been collaborating with colleagues from the Centre of Expertise in Longevity and Long-term Care, Faculty of Humanities, Charles University in Prague, Czech Republic. The Ministry of Health of the České Republiky tasked us with exploring case management as a complex intervention in people with dementia. A multidisciplinary team with experiences in general practice, sociology, nursing, ethics, social care and psychology led by Iva Holmerová, we set out to explore the current understanding of dementia case management and develop a toolkit for implementation in the Czech Republic, where no such model currently exists.
In Europe people with dementia syndrome and their carers all too often encounter services that are limited in resources, poorly coordinated, variable in quality and quantity, protocol-driven, inequitable, sometimes stigmatising and are only weakly tailored to individual and family needs. These negative features appear common across Europe, where there is a need to develop new (or reconfigure existing) services for people with dementia and their families so that they experience a smoother journey along the illness trajectory and receive services that are more person-centred, effective and efficient. One strategy for improving the effectiveness of care is to develop programmes that enhance coordination and implementation of care plans.
Through a series of workshops with key stakeholders, literature review and ethnography we modelled case management for dementia which led to a discussion paper in the International journal of Dementia, several Czech monographs, a toolkit of skills for dementia case managers and a guide to good practice in implementing case management.
In September I was invited to present a half day workshop on case management for people with dementia at the Gerontological conference in Prague co-hosted by the Czech Alzheimer’s society in the impressive National Technical Library. The workshop was well attended, we had a mix of nurses from care homes and social workers and their managers. English was not widely spoken by the attendees and it was a new experience for me having my words translated into Czech and then the questions and lively discussion translated back to me in English.
The following day I was invited to present on case management at a workshop in the district of Prague 7 where they want to implement case management across all sectors. It was an informal afternoon in a local café and was attended by commissioners, social workers, housing and representatives from the third sector such as the local YMCA and the Salvation Army. Complex caseloads of people who are homeless, those with drug and alcohol problems as well as those with dementia, led to the interest from practitioners. The end of the workshop led to some practical definitions and ways forward for implementation, and was a rewarding process to be involved in.
As our three year collaboration ends this year we are looking for new ways to continue to work together on this successful collaboration. And I am looking forward to presenting research methodologies to the PhD students at the Prague Centre of Expertise in Longevity and Long-term Care in November.
This study was supported by the research project 15-32942A-P09 AZV of the Ministry of Health České republiky Case management as a complex intervention in patients with dementia
By , on 6 September 2018
I have been assured that asking oneself “Why am I doing this?!” is not an experience unique to any one stage of a research career. The key is having a good answer.
At the height of the British summer heat wave, I travelled to Chicago, to give an oral presentation to the Alzheimer’s Association International Conference (AAIC) on a project I’ve joined, funded by the Dunhill Medical Trust, addressing inequality in primary care of people with dementia among UK ethnic groups.
The first phase of the project has already been published in Clinical Epidemiology and found that dementia diagnosis incidence was significantly higher in Black men and women compared to White men and women, respectively, and was significantly lower in Asian women compared to White women. Tra recently wrote a blog on this below. I presented these results along with new results showing inequality by ethnicity in prescribing of certain drugs among patients with dementia.
The presentation itself went smoothly, and I breathed a sigh of relief as I walked off stage. With the nerves and the bright lights out of the way, I was excited to find that a queue of people were keen to talk with me about the project.
Multiple researchers expressed how grateful they were that someone was looking into this area, highlighting that while the demographics of many developed nations are changing, the research has not often kept up. Others wanted to share personal experiences, speaking of the reluctance of family members to seek a diagnosis or medication even as their condition progressed, especially when cultural factors around memory problems and fear of stigma were at play. These conversations made clear that the need to identify inequalities and break down barriers to good quality care was not a problem unique to the UK, but everyone I spoke with reinforced how important it was to see that we’re working on it.
In the midst of Stata code, funding applications, and reviewer comments, we can lose sight of the goal. As researchers, we have the privilege of generating work that can improve peoples’ lives. We can be reminded of that by our Patient & Public Involvement advisors, our colleagues, or a review of the “Impact” section of our own funding application (and hopefully by this blog post). My conversations with a variety of people after my presentation was a wonderful reminder of the goal and impact of this project. I hope you can take a moment today to remember the goal of your work too, because you’re doing this for a good reason!
By , on 31 August 2018
In this post Tra Pham discusses her recent work with colleagues from the department, Division of Psychiatry and King’s College London on new diagnoses of dementia and the differences among ethnic groups.
Around 46.8 million people worldwide have dementia; this is expected to rise to 131.5 million by 2050. Recent studies have reported stable or declining rates of new dementia cases overtime.
In 2010, members of our department (Rait et al, 2010, BMJ) conducted a primary care database study to investigate survival of people with a diagnosis of dementia, and reported a stable rate of new dementia diagnoses in UK primary care between 1990 and 2007. We know little about the differences in the likelihood of receiving a dementia diagnosis among different ethnic groups. Some evidence has indicated that people from Black and Minor Ethnic (BME) groups present at services (i.e. GP) later in their illness. Therefore, compared with the White British ethnic group, BME dementia patients may have less access to timely diagnosis. This can prevent them from benefiting from early intervention and treatment which may help slow the progression of the disease.
Our recent study reported the overall rate of new dementia diagnoses in UK primary care between 2007 and 2015. In addition, we reported, for the first time, the rate by White, Asian, and Black ethnic groups. Pulling together current best evidence of new dementia cases in the community and the 2015 UK census data, we estimated the proportion of White and Black people developing dementia who received a diagnosis in 2015. Our hypothesis was that there would be a smaller proportion of Black people with dementia who were diagnosed compared with people from the White ethnic group.
We analysed data of 2.5 million older people from The Health Improvement Network (THIN) database. 66,083 new cases of dementia were identified, which corresponded to an increased rate of new dementia diagnoses between 2007 and 2015 (Figure 1).
Compared with White women, the dementia diagnosis rate was 18% lower among Asian women and 25% higher among Black women. This rate was 28% higher among Black men and 12% lower in Asian men, relative to White men. Based on diagnosis rates in THIN data and projections of new dementia cases from community cohort studies, we estimated that 42% of Black men developing dementia in 2015 were diagnosed, compared with 53% of White men.
The results thus suggest that the rates of people receiving a diagnosis may be lower than the actual rates of developing dementia in certain groups, particularly among Black men. There are several possible explanations for this. It could indicate that Black men experience barriers to accessing health services or receiving a diagnosis. GPs may be more reluctant to diagnose dementia in BME groups especially if culturally competent tests are unavailable. GPs and families might also be reluctant to name dementia in communities where more stigma is associated with a diagnosis.
Our study emphasises the need for service improvement targeting BME groups who might be facing barriers to accessing health care services and getting a dementia diagnosis. GPs should be equipped with culturally appropriate assessment tools in order to make a timely diagnosis of dementia for BME patients.
Our findings also highlight the importance of raising awareness of the benefits of getting a timely diagnosis of dementia, particularly in people from minority ethnic groups who may be more at risk of dementia. Timely diagnosis of dementia can lead to more targeted support and enable GPs to provide appropriate patient care management. These benefits can be explained to the patients by family and friends, as well as professionals such as nurses and social workers. They can also help the patients to overcome the fears of talking about dementia. Faith and community groups can contribute to ensuring that local dementia services are accessible to all.
This study is conducted in collaboration with King’s College London. This work is supported by The Dunhill Medical Trust [grant number R530/1116]. Our article and relevant references can be found at:
Pham TM, Petersen I, Walters K, Raine R, Manthorpe J, Mukadam N, Cooper C (2018). Trends in dementia diagnosis rates in UK ethnic groups: analysis of UK primary care data. Clinical Epidemiology (10): 949-960. doi: 10.2147/CLEP.S152647.
Can a self-management intervention facilitated by peer support workers reduce readmission rates to acute care for people discharged from crisis resolution teams
By , on 23 August 2018
In this post Louise Marston talks about their recent study published in The Lancet on peer support for reducing readmission among people to acute care for people discharged from crisis resolution teams, which provide intensive home treatment following a crisis.
CORE (CRT Optimisation and RElapse prevention) has been a big part of my working life for a number of years. It was an NIHR funded programme grant from 2011 to 2017. One of the work packages was an individually randomised controlled trial supported by Priment Clinical Trials Unit. The results were published in The Lancet recently.
Why did we do this study?
Crisis resolution teams work in the community to help prevent admission to acute care at times of mental health crisis. Nationally, they have not resulted in a decrease in bed use.
Self-management is a way for people to actively manage a condition; recognising the signs of crisis and knowing how to manage symptoms and other aspects of their life. Interventions may aid self-management, but might be more effective when facilitated and motivated by someone else. Peer support workers have had similar experiences to the people they are supporting, so are able to be a role model for recovery.
Who did we enrol in the study?
We recruited people who had been on the caseload of mental health crisis resolution teams, been discharged from the crisis resolution team in the previous month and had capacity to consent to taking part. We did not recruit those who were deemed to be high risk to them or others, were discharged out of the area or who could not understand English.
What was the intervention?
This was a self-management workbook, which was adapted from other resources in an earlier CORE work package, which was facilitated by a peer support worker in up to 10 sessions. In these sessions, peer support workers were encouraged to help participants complete the workbook and to reflect and discuss their recovery plans. Peer support workers were also employed to provide supportive listening and instil hope of recovery, through sharing strategies to aid recovery learnt through their own recovery journey.
What was the comparison?
Participants in the control group were sent the workbook in the post, but did not have access to a peer support worker and were not given further guidance on how to use the workbook. They could also access usual care.
What did we find?
We found that those randomised to the peer support worker group were less likely to be readmitted to acute care in the year after they enrolled in the study compared with those who were randomised to the workbook alone (29% versus 38% respectively). Time to admission was also significantly longer in the intervention group, as was satisfaction with mental health care and self-rated recovery at 4 month follow-up.
What does this mean?
The rate of readmissions was lower than expected overall. However, peer support workers have the potential to help reduce readmissions further in people who have had a mental health crisis, giving them the opportunity for a sustained recovery. It also means that the burden on acute services will be less; potentially giving savings to the NHS.
Satisfaction with care related to all mental health services; even so as this was statistically significant at four month follow-up suggesting that participants liked having a peer support worker, and uptake of the peer support worker intervention was good. If peer support workers after mental health crisis were more widely available, this may go some way to improving Trust satisfaction ratings.
Johnson S, Lamb D, Marston L, Osborn D, Mason O, Henderson C, Ambler G, Milton A, Davidson M, Christoforou M, Sullivan S, Hunter R, Hindle D, Paterson B, Leverton M, Piotrowski J, Forsyth R, Mosse L, Goater N, Kelly K, Lean M, Pilling S, Morant N, Lloyd-Evans B (2018) Peer-supported self-management for people discharged from a mental health crisis team: a randomised controlled trial Lancet 392 409-428 https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)31470-3/fulltext
Inter-professional working at the frontline; lessons learned from integrated care teams in Tower Hamlets
By , on 10 August 2018
In this post, Mirza Lalani discusses his experience as an embedded researcher in Tower Hamlets
‘The process whereby members of different professions and/or agencies work together to provide integrated health and/or social care for the benefit of service users’ (Pollard et al, 2005)
Why inter-professional working? The World Health Organisation (WHO) has stated that inter-professional collaboration is an essential component in satisfactory service delivery.
Health and social care systems in the UK are facing unprecedented pressures to manage rising demand from an ageing population, which is compounded by an increasingly demotivated and constrained workforce and the requirement to operate within tight financial parameters. Integrated care is often presented as part of the solution, as strengthening coordination between health and social care systems and among different care settings to provide joined up care that can help meet the needs of the growing number of patients with complex health and social care problems.
In 2015, the NHS England Five Year Forward View put a lot emphasis on new models of care based on the idea that care should be person-centred. One of these new models of care, a Multi-specialty Community Provider (MCP) partnership of health, social and voluntary care providers and commissioners in Tower Hamlets, was awarded Vanguard status in 2015. A key aspect of the Vanguard programme is inter-professional working, especially between frontline health and social care professionals with the goal of providing holistic care.
For the last 12 months, I have been working as an embedded researcher in Tower Hamlets spending a lot of time with frontline multi-professional teams to understand how they work. These teams include community nurses, physiotherapists, occupational therapists, care navigators and social workers working together to meet patients’ needs in their locality. The co-location of these staff is an important step towards integration, but its impact is often overstated and in reality professional culture, identity and boundaries make it difficult for senior management to realise their vision of a fully integrated, coherent and joined up health and social care service. For instance, having different management lines (for social workers on the one hand and health professionals on the other) can be a barrier to people feeling like they belong to one team.
There are some reasons to be optimistic. I have witnessed a cultural shift among health professionals, in particular GPs, who are more inclined to refer patients to other professionals when they feel there is a need for social intervention. Indeed, this shift away from a biomedical to a more psychosocial approach has seen the development of new roles within Tower Hamlets including social prescribers and care navigators. With 1 in 5 patients visiting their GP with non-medical problems such as employment, immigration, housing and welfare issues, these new roles have a significant part to play in the care landscape and should be at the centre of future system and service development. In Tower Hamlets, GPs have remarked on the crucial role that care navigators and social workers can play as there is growing recognition of issues associated with the wider social determinants of health.
The evidence for the effectiveness of improving patient and health service outcomes for integrated care has been mixed at best. Initially most integrated care programmes were based on case management, which means identifying the top 2-3% of the population (the most complex adults) most at risks of hospital admission. However, now there is increasingly a move towards looking at whole population health needs, with a stronger focus on prevention and management rather than treatment. Whether there is the capacity on the ground to do so, I’m not entirely sure. In fact, based on my emerging findings we are no closer (if not further away) from Andrew Lansley’s somewhat utopian vision of several local fully integrated health and social care systems – it could be argued that care services have actually become more fragmented due to dwindling resources, workforce shortages and low levels of morale among our frontline professionals.
In Tower Hamlets, however, there is growing effort in generating connections and strengthening relationships among different professionals and across different health and social care organisations. Multi-professional teams are an important way of addressing siloed and disjointed working and hence, addressing the differences in professional culture will be integral to enabling partnership working to be effective. This is an important lesson for those embarking on integration programmes – one person’s integration is another person’s fragmentation (Leutz et al, 1999), thus, harmonising the health and social care workforce will be a key facilitator in fostering positive population health outcomes. A bottom-up approach with empowered multi-professional teams focussed on meeting the specific needs of the local population might finally help us deliver what until now has been mainly rhetoric: patient-centred care.
By , on 9 August 2018
It’s conference season and this is another blog about the benefits of travelling abroad to meet with colleagues. At the end of May I attended the WONCA Europe conference in Krakow, Poland. This had over 1,000 delegates, including from several non-European countries, as well as many European ones. The largest number of delegates came from Scandinavian countries and the Netherlands, with rather fewer from the UK.
I gave an oral presentation about our recent qualitative study exploring the distress and mental health difficulties experienced by a sample of English GPs and the barriers to getting effective support, which was well received. I also ran a workshop on the topic of ‘Encouraging clinicians to work effectively with people with medically unexplained symptoms’ which is the main topic for this blog.
I was concerned that this workshop might not be very well attended as it was placed late in the conference programme and there were many parallel sessions and workshops in each time slot. However, 20 clinicians attended from 8 different countries – (Belgium, Estonia, Finland, Indonesia, Israel, Moldova, Portugal and the UK) – which I was very impressed by, as well as the ability of most of those present to discuss complicated issues in English, despite it not being their first or sometimes even their second language.
I presented some background information about the high prevalence of medically unexplained / functional symptoms in primary care and a summary of findings from three qualitative studies conducted by members of PCPH – Mary Howman, Alex Warner and Katie Yon – exploring the attitudes of GP registrars, hospital clinicians and Foundation year doctors to working with such patients.
We then had time for a discussion about how to address the management of such patients, as well as the question of clinician attitudes. This is clearly a common issue internationally and no-one at the workshop had any difficulty identifying such presentations in the patients they see as GPs and quite often found them challenging. However, the discussion also brought up some interesting observations and perspectives from different countries.
Ideas I particularly took away included a clear wish from all those attending that this topic should be introduced from the beginning of the medical school curriculum, with the possibility of non-organic causes for patients’ symptoms and dealing with uncertainty being revisited throughout students’ training.
There was also an interesting discussion about working more effectively across the primary-secondary care interface, which is something which may be particularly relevant with such patients. There were clear differences in how easy it was to make good links with hospital specialists to enable discussions about individual patients – this seemed more likely in smaller less densely populated countries like Finland or Estonia. Several participants suggested that primary care clinicians probably had a better understanding of how to work with patients with unexplained symptoms and that there might be a role for them in educating the hospital clinicians! The importance of family history and past experiences of illness in taking a history from such patients was also emphasised and I’m not sure how often this is done.
I found discussing these issues with colleagues from different countries and health care systems very stimulating and thought-provoking and would strongly encourage junior researchers to present their work at international conferences where possible in order to get some new perspectives.
Krakow is a very beautiful city with a renowned mediaeval marketplace, a castle complex and cathedral on the banks of the river Vistula. The new state of the art conference centre is on the other side of the river and only 10 minutes walk from the castle and the beginning of the old town, so it was possible to include some cultural visits in my time there.
#OPAL2018: Identifying and addressing shared challenges in conducting health and social care research for older people
By , on 2 July 2018
In this post Rachael Frost from the Centre for Ageing and Population Studies discusses the fantastic achievement of being awarded a place on an international early career researcher workshop in Brazil.
I was recently lucky enough to be awarded a place on a Brazil-UK Researcher Links workshop: Identifying and addressing shared challenges in conducting health and social care research for older people (OPAL) in June 2018. Funded by the British Council, the Newton Fund and Sao Paolo Research Foundation (FAPESP), the workshop aimed to encourage collaboration among UK and Brazilian early career researchers and to develop joint research proposals to address some of the major challenges facing ageing research in both countries. As an early career researcher in the Centre for Ageing and Population Studies in PCPH, I was really excited about the opportunity to meet other early career researchers and share our experiences.
Brazil’s population is ageing rapidly, and in a much shorter time frame than many European countries. Whilst France had 150 years to adjust to a doubling in the proportion of the population aged over 60, Brazil has just 20 years. Dementia and frailty are on the rise in both Brazil and the UK. However, Brazil is approximately 35 times the size of the UK, and faces extra challenges in access to healthcare, particularly in rural areas (e.g. despite the size difference, the UK has almost ten times more GPs).
The workshop was organised by Dr Kathryn Hinchliff-Smith, Dr Reena Devi and Associate Professors Adam Gordon and Alessandro Jacinto with teams from both the University of Nottingham and Sao Paolo State University. It brought together 13 UK early career researchers from a range of UK universities and 18 Brazilian early career researchers, in the small Brazilian city of Botucatu at the Sao Paulo State University School of Medicine. It was a long flight over (not helped by Adam telling us everything that went wrong with the plane the last time they flew out…), but well worth it when we got there!
As well as serving us copious amounts of tasty Brazilian food, the five day workshop included a talk each day from the workshop mentors. They discussed the context of ageing research in Brazil and the UK and the key challenges for each country. The early career researchers presented posters on current projects and future research interests, and took part in larger discussions of how the academic research context works in Brazil and the UK. We were also given a lunchtime tour of Botucatu’s hospital.
In addition to this, one of the main workshop aims was to develop international research ideas and grant proposals.
We were put in small groups, and spent a couple of days discussing our interests and ideas. It was sometimes a difficult balance trying to find a project that was both feasible and interesting to everyone in the group, however by the last day each group had formed clear plans for projects. We presented these ideas around dementia, frailty and palliative care to the rest of the group.
In addition to lots of hard work, we also made the most of fantastic opportunities to see round Botucatu. Although it was technically winter in Brazil, it was the same weather as an English summer. An enthusiastic group of us got up at 6am two days running to see the ‘base of the clouds’ (a beautiful sunrise view of miles of wilderness) and to have an early morning dip in a waterfall! We also managed to fit in evening piano concerts, coffee museum visits, acai berry ice cream and a fair few caiprinhas. Our Brazilian colleagues were fantastic and welcoming and showed us how to dance Brazilian style!
It was an amazing opportunity, and all our groups are planning to take our ideas forward with support from the workshop mentors. In addition to new proposals and collaborations, we also learnt a lot about each other’s countries (including a smattering of Portugese), and made new friends and colleagues in both Brazil and the UK. Obrigada, Brasil and hope to see you again soon!
By , on 22 June 2018
In this post Daniel Aggio talks about his recent trip to the American Heart Association’s conference in New Orleans, and the exciting findings on the effects of physical activity and risk factors for cardiovascular disease.
In March this year, I was fortunate enough to attend the annual American Heart Association’s conference on Epidemiology and Prevention (EPI Lifestyle) in New Orleans. The overarching goal of the conference is to promote development and application of translational and population science to prevent heart disease and stroke. The conference theme this year was health promotion: risk prediction to risk prevention, with a large focus on behavioural strategies to promote and sustain healthy lifestyles. This conference was highly recommended by my supervisors and it turned out to be a fantastic experience. There were some inspirational speakers from the field of physical activity, such as Professor Andrea LaCroix, who presented her work on American older women showing that light physical activity is associated with a reduced risk of cardiovascular events in later life. This was particularly encouraging given that a recent paper from the British Regional Heart Study (BRHS) mirrored these findings in older men.
On the first day of the conference, I was presenting in one of the moderated poster sessions and what a lively session it turned out to be. The poster I was presenting was from my PhD work utilising 20-years of physical activity data from the BRHS, a prospective cohort study of middle-aged men transitioning into old age. In this study I used group-based trajectory modelling, a form of latent class growth analysis, to plot trajectories of physical activity and examine their associations with a range of cardiovascular risk factors in old age. The take home message was that although sustained high levels of activity proved optimal, in fact sustaining more modest amounts of activity from midlife was also associated with significant health benefits. The session was well attended and I received some tips and advice from one of the first researchers to utilise group-based trajectory modelling in physical activity research, Dr Tracie Barnett. Since returning to UCL, I entered this poster into the Faculty poster competition in which I was awarded the runner up spot. It was amazing to see my work being recognised with so much other great research going on in the Faculty.
EPI Lifestyle also had a strong programme of events for early career researchers, including a three-minute thesis competition and a session on identifying your niche in academic research. I was also invited to participate in a round table discussion on forging International Collaboration, where I represented the BRHS. Representatives from cohort studies from around the world were in attendance along with early career researchers looking to find out more about these studies and opportunities for collaborations. This was a great opportunity to learn about other cohorts, many of which I hadn’t come across before, and also to network with some of the leading investigators of these studies. More information about these cohorts can be found here.
Overall, EPI Lifestyle was an amazing experience where I learned some great science, but the highlight for me was the networking opportunity. I made some valuable contacts that gave me some great advice and will no doubt be useful connections in my future career.
Are we dancing with the devil? Thoughts on academics working with private companies in the digital health field
By , on 20 March 2018
In this post Julia Bailey from the eHealth Unit discusses collaborating with the private sector with particular reference to digital health.
Digital health is booming. In this article I stereotype ‘the commercial sector’ and ‘the public sector’ to illustrate important inherent tensions between the approaches, assumptions, interests and motivations of different players in the digital health field.
Digital innovations can empower patients, improve health, and potentially save health service resources. There are innovation success stories such as Nervecentre clinical records software which is saving lives and NHS resources by alerting clinicians to patient sepsis. Another success story is the Sleepio cognitive behavioural therapy app for insomnia which has been commissioned in many NHS localities. Digital health is fertile ground for the commercial sector, and there is excited talk about how to ‘monetise’ healthcare, and ‘disrupt’ existing NHS systems.
Tech companies are stereotypically innovative and dynamic. Small companies can be flexible and responsive, and the short timescales from idea to product can be very impressive. However, digital health innovation can sometimes be characterised by technology in search of a health problem rather than health problems which need innovative solutions, and the vast majority of health apps and websites have not been evaluated to see whether they have health benefits or whether they cause harm.
Academics and clinicians can offer clinically relevant, evidence-based design, and rigorous evaluation. Ethical review, data monitoring and regulatory protocols allow for patient wellbeing and safety to be carefully considered. However, while academic research can be thorough and insightful, the timescales of research and development within the NHS are stifling innovation – it can take 5 years or more from applying for a grant to publishing the results, at costs running to hundreds of thousands of pounds. Public sector funding does not support continuous iteration, or a willingness to spend on ideas which might not work. Innovations are implemented in a piecemeal way, and dropping digital innovations into an inefficient organisation such as the NHS without a whole-system review is unlikely to be successful.
NHS staff may feel wary of private sector motivation and conduct. For example, the Reed Elsevier group (who publish the Lancet) was involved in organising arms trade fairs until public pressure forced a stop. Pharmaceutical companies invest hugely in advertising and sponsorship which influences doctors’ prescribing habits, and pharmaceutical company research tends to produce favourable results. Patient groups supported by pharma may increase pressure to endorse particular treatments. Public trust has been eroded regarding the handling of sensitive data: for example Care.data was designed to take data from GP records and to combine it with hospital records to find better ways to prevent, monitor or manage illness, but the programme was dropped after public outrage over the sharing of sensitive medical information with commercial entities without explicit consent. In 2015, 1.6 million NHS records were unlawfully shared with the Google’s Deepmind Health machine learning research group. Some mechanisms for app monetisation may engender distrust, for example advertising or selling data.
There is a risk that digital innovation is used as a pretext to reduce face-to-face health services. For example, sexual health services in England have been heavily cut with the expectation that 30% of London’s patients will go online to request tests instead of attending clinics. However, the new online system has not been evaluated in terms of its impact on health, workload, inequalities or cost-effectiveness, and clinics have been reduced or closed before the online service was ready to roll out.
*Stereotypes for illustration. There are many exceptions to these characterisations…
There is an important tension between ‘profit’ and ‘better health’ as the criteria for success of an innovation. It is tempting to judge the success of a product by how popular (or profitable) it is rather than its impact on health. Both popularity and health benefit are necessary, since an intervention needs to be attractive and engaging to have optimum impact on health. Digital health interventions need technical and clinical updating, which means that an income stream is necessary, but it is essential to enshrine health benefit to ensure that innovations are ethical and beneficial.
Collaboration between sectors can play to different strengths to develop high quality, sustainable innovations within reasonable timescales, but all parties need to be aware of any conflicting assumptions, priorities and interests. We need productive cross-sector collaboration (including patients/users) to develop effective, attractive and engaging interventions underpinned by the best available evidence.
- There are important inherent tensions when academics, clinicians and health service commissioners collaborate with the private sector
- Collaboration between sectors can make the most of different strengths and is likely to lead to better interventions
- Health benefit should be enshrined in all digital health innovations
- Rigorous evaluation is needed to make sure that money is well spent, and that digital innovation leads to better health (or at least no harm)
Acknowledgements: Grateful thanks to colleagues who have commented on drafts of this blog.
By , on 19 February 2018
In this post, Kingshuk Pal discusses his experiences of moving from qualitative research to quantitative research.
So I’m between research methodologies. It’s a bit awkward as you might imagine. Bumbling my way through a no-man’s land between two opposing paradigms – the self-conscious embarrassment of adolescence an unwelcome companion once more. I question myself constantly. Was I truly unhappy being where I was? Is the promise of happiness at the other end of the rainbow just a fairy tale?
Should I seek to define myself as a qualitative researcher or a quantitative researcher? Can I meaningfully be both? Am I method-fluid, mixed-methods or just mixed-up?
The transition is certainly not an easy process. Language acquisition skills apparently peak by age 7, so the evidence-based solution for learning Stata would be to find a time machine that can transport me back in time 30 years or so. But as my time-machine building efforts are short a DeLorean and flux-capacitor or two, having a study group and working through a short introduction to Stata for biostatistics with my colleague Tom Hartney has certainly proved a remarkably helpful alternative. Amazing what you can learn from copying the homework of someone way smarter than yourself. Sadly my attempts to learn about medical statistics and epidemiology have not gone quite so well. My textbooks are currently gazing down at me judgementally from a shelf where they are gainfully employed as bookends… Maybe I can start a book club… targeting anyone suffering from insomnia. For any readers still awake – thanks – and please let me know if you’ve got any good suggestions for epidemiology or stats courses…
There may be some people curious about what tempted me over to what my qualitative friends suspiciously view as the “dark side”. I’m exploring the links between diabetes and depression by looking at routinely collected primary care data (from the THIN database). Poorly controlled diabetes increases the risk of heart attacks, strokes, amputation, blindness and renal failure (National Collaborating Centre for Chronic Conditions, 2008). The presence of depression increases the risk of poorer outcomes in diabetes as it is associated with poor glycaemic control and increased rates of complications (de Groot et al. 2001; Lustman et al. 2000). Depression has also been found to double the likelihood of being diagnosed with diabetes (Eaton et al. 1996; Kawakami et al. 1999). The relationship between the two might be partly due to shared underlying pathophysiology driven by changes in stress hormones in the hypothalamus-pituitary-adrenal cortex axis and sympathetic nervous system (Renn et al., 2011; Snoek et al., 2015). Both conditions are also associated with subclinical inflammation (Tabák et al., 2014). There are also behavioural factors and complications associated with these conditions that link them through poorer self-care due to raised BMI, reduced physical activity etc. (Lin et al., 2004). The net result is a shared increase in vulnerability to these common chronic conditions and poorer outcomes (including increased mortality) where they co-exist (Park et al., 2013). My area of interest is the use and impact of anti-depressants in people with type 2 diabetes and seeing how that reflects the interactions described above.
In contrast, part of my doctoral work on the HeLP-Diabetes project was qualitative research that touched on the negative emotional burden (diabetes related distress) that was placed on people living with type 2 diabetes (Kingshuk et al., 2018). And now I sometimes think about which might be more helpful for me as a doctor – to understand or measure the impact of depression and distress in people living with type 2 diabetes? Clearly I need to be able to do both. If I don’t understand what it means to be depressed with diabetes, it’s harder for me to engage with patients and frame my advice in terms that are meaningful and relevant for them. But when time and resources are increasingly limited, I need evidence to help guide me as to how hard I look for depression, who I should focus on and what the best treatment option might be.
So as a clinician, I need both. But as a researcher can I do both? There is often debate in the medical profession about the merits of generalists Vs specialists. And most GPs would unsurprisingly mount a passionate case for the role of the generalist providing holistic care and continuity over time which is different to the focused care provided by specialists. So I hope the same is true with research – and maybe somewhere there’s a place for a mixed-up researcher like me…