Covid-19 and lack of linked datasets for care homesBMJ 2020; 369 doi: https://doi.org/10.1136/bmj.m2463 (Published 24 June 2020) Cite this as: BMJ 2020;369:m2463
All rapid responses
Hanratty et al (1) draw attention (once more) to care homes and the existential threat posed by Covid-19. I question whether data linkage would have changed the recent fate of the care home population. When a runaway train is threatening to crash into a station you don’t need more data, you need timely action and that needs clear unequivocal instruction. Data sets without active ownership can be remarkably ineffective, illustrated by the failure to manage antipsychotic use in care homes (2).
Care Homes have metamorphosised from a housing solution to become latter-day infirmaries. Standardised assessments of need and burgeoning data sets will undoubtedly reveal what is needlessly disputed, that residents’ needs are driven by health issues that are often complex and inadequately recognised.
Concern that SAGE gave little consideration to Care Homes is not a consequence of inadequate data but simply reflects the lack of policy leadership and accountability for care homes and their residents. Yes, there is much social care experience in commissioning and managing contracted beds, but this lacks expert clinical input. Similarly, Public Health England may well have sophisticated analytical capabilities but respectfully, it lacks the competence and capacity to provide effective support to Care Homes.
Many distinguished social care leaders have senior positions in care home board rooms but clinical leadership is rare. The consequence is that providers, be they for-profit, charitable or small business enterprises forage around NHS agencies, PHE and regulators for clinical guidance often to be frustrated. Lest there be any confusion, the prime responsibility of care homes is the safety and well-being of residents and staff, the mass transfer of untested patients to clear NHS beds laid bare a different set of priorities within SAGE and consequently the NHS.
Priority should be given to establishing resilient leadership for care homes that blends clinical and social care matters and this should shape data needs and flows regarding care home activity.
1 Covid-19 and lack of linked datasets for care homes. BMJ 2020; 369 doi: https://doi.org/10.1136/bmj.m2463 (Published 24 June 2020)Cite this as: BMJ 2020;369:m2463
2 Ala.Szczepura, Deidre Wild, Amir Khan, D W Owen, T.Palmer, Tariq.Muhammad, Michael.D.Clark, Clive Bowman. Antipsychotic Prescribing in Care Homes Before and After Launch of a National Dementia Strategy: An Observational Study in English Institutions over a 4-year Period. BMJ Open 2016;6:9 e009882 doi:10.1136/bmjopen-2015-009882
Competing interests: No competing interests
High rates of COVID-19 related deaths in people living with dementia have been reported since the pandemic started. This is likely associated with the fact that many COVID-19 deaths correspond to care home residents, most of whom have dementia. People with dementia may be at increased risk of developing more severe COVID-19 infection (1) and die from it (2) according to studies conducted on hospital cohorts. Furthermore, carriers of ApoEε4/ε4 genotype, the strongest genetic risk factor for Alzheimer’s disease, are more likely to develop complications from COVID-19 (3). Although it remains unclear whether dementia is directly associated with the severity of COVID-19 or influenced by other factors (e.g. older age and associated comorbidity), growing evidence indicates that this population is extremely vulnerable to the effects of the virus. Not only that, but up to 5.7% of patients with severe presentation of COVID-19 have stroke, which can precipitate cognitive decline in people already living with progressive cognitive difficulties (4). To prevent infection, people with dementia have gone through confinement and isolation, both in the community and in care homes. These measures, also involving the removal of essential sources of support, care and meaningful contact with family members (including spouses and main partners in care), may have long-lasting deleterious effects. A survey conducted among patients attending an Italian memory clinic showed that up to 31% of people with dementia had experienced significant cognitive deterioration during the first month of lockdown and 54% a worsening of agitation, apathy and depression (5).
Mitigating the impact of COVID-19 on people with dementia should be a public health priority. The measures required include ensuring access to enough PPE and training on infection prevention and control for care workers, comprehensive testing policies, access to quarantine and step-down facilities, and implementation of guidance on compassionate isolation and person-centred care to lessen the psychological and cognitive detrimental effect of confinement. In many parts of the world, the rates of infection are beginning to decrease. We now have the opportunity to learn from these first experiences with COVID-19 and be better prepared so that, in future waves, people living with dementia are not left behind.
1. Atkins JL, Masoli JAH, Delgado J, et al. Preexisting comorbidities predicting severe COVID-19 in older adults in the UK Biobank community cohort. https://doi.org/10.1101/2020.05.06.20092700
2. Bianchetti A, Rozzini R, Guerini F., et al. Clinical presentation of COVID-19 in dementia patients. J Nutr Health Aging 24, 560-562 doi.org/10.1007/s12603-020-1389-1
3. Kuo CL, Pilling LC, Atkin JL, et al. APOE e4 Genotype predicts severe COVID-19 in the UK Biobank community cohort. The journals of Gerontology: series A, glaa131: https://doi.org/10.1093/gerona/glaa131
4. Mao L, Huijuna J, Wang M et al., Neurologic manifestations of hospitalized patients with coronavirus disease 2019 in Wuhan, China. JAMA Neurol. 2020;77(6):683-690. doi:10.1001/jamaneurol.2020.1127
5. Canevelli m, Valleta M, Toccaceli M., et al. Facing dementia during the covid-19 outbreak. J Am Geriatr Soc. 2020 Jun 9. doi: 10.1111/jgs.16644.
Funding: ASG is supported by the ESRC/NIHR Dementia Research Initiative (ES/S010467/1). ACH is supported by the UK Research and Innovation’s Global Challenges Research Fund (ES/P010938/1).
Competing interests: GL and ACH report no competing interests. ASG reports fees from MedAvante Pro-Phase. All reported financial activities are unrelated to this correspondence.
A few years ago, I published a comprehensive review on integrated care in dementia in England, in which I looked at the evidence for components of the ‘care pathway’ as was available at the time (1). That was of course during an era "pre-Covid".
In the course of my book, I included a number of different examples of the use of data, such as collecting patient feedback in the development of innovative services, ascertaining how widespread physical restraints are used, determining the risks posed by polypharmacy, deducing the exact prevalence of ‘tooth decay’ in care homes, estimating how ‘sexually active’ residents might be, to name but a few.
There is nothing in a recent BMJ piece which I fundamentally disagree with, of course, and it was interesting especially also for what it chose not to discuss (2). The piece, for example, could have discussed how "linked datasets" are potentially useful for communication between care home managers and GPs (3), in pursuit of ‘integration’ howeverso defined (4).
In my book, I drew attention to further issues about considerations over such data. I referred to data privacy and security of data under EU legislation, in the days pre-GPDR (5). But this would certainly not be a barrier for future development of service provision and research capacity now in linked datasets in care homes. I also considered the ‘interoperability’ framework, which had just been published by NHS England (6). There seems to have been little progress on this front, possibly due to political energy being sucked elsewhere. And yet this is important for the NHS to talk to bits which are outside the NHS. That issue hasn’t gone away either.
This present rapid response isn’t, however, a complaint about “reinventing the wheel”. Quite the reverse, I support the authors in their call to action. However, I must say that there has been a curious cultural resistance to acknowledge the significance of datasets for older people. The use of ‘routine data’ to build capacity and to forge multidisciplinary collaborative research in older people is still undoubtedly for me a crucial issue (7). I should like to add here this is not just relating to residents in care homes, but also persons receiving care in their own homes. Regarding the use of data sets in home care, lessons can perhaps be learnt from other jurisdictions (8), but clinical care could improve from such an approach. One vexing question, for example, which we could look at is whether patients indeed ‘recover’ after hospitalisation for an acute illness such as delirium (9).
I agree fundamentally that there are various issues, including political and financial. But let's not tiptoe around the problems, please. Overall, I think it’s hard to escape a fundamental occasional prejudice against older people. I am also compelled to write this response, because I don’t feel we hear much about research in health of recipients of home care. This is either the ‘elephant in the room’, or the ‘canary in the mineshaft’.
Dr Shibley Rahman
(1) Rickman, S. (2018) Book review: Enhancing Health and Wellbeing in Dementia: A Person-Centred and Integrated Care Approach, Shibley Rahman. The British Journal of Social Work, Volume 48, Issue 4, June 2018, Pages 1132–1135, https://academic.oup.com/bjsw/article-abstract/48/4/1132/4596627, https://doi.org/10.1093/bjsw/bcx083 (accessed 25 June 2020).
(2) Hanratty, B., Burton, J.K., Goodman, C., Gordon, A.L., Spilsbury, K. (2020) Covid-19 and lack of linked datasets for care homes. BMJ 2020; 369. https://www.bmj.com/content/369/bmj.m2463, doi: https://doi.org/10.1136/bmj.m2463 (accessed 25 June 2020).
(3) Data Linkage: joining up the dots to improve patient care, Health Foundation, 28 September 2018, https://www.health.org.uk/newsletter-feature/data-linkage-joining-up-the... (accessed 25 June 2020).
(4) Humphries, R. The unifying principle of integration, Guardian, Wed 2 Nov 2011, https://www.theguardian.com/social-care-network/2011/nov/02/integration-... (accessed 25 June 2020).
(5) Wolford, B. (n.d.) What is GDPR, the EU’s new data protection law? https://gdpr.eu/what-is-gdpr/ (accessed 25 June 2020).
(6) NHS England (n.d.) Interoperability https://www.england.nhs.uk/digitaltechnology/connecteddigitalsystems/int... (accessed 25 June 2020).
(7) Todd OM, Burton JK, Dodds RM, et al. New Horizons in the use of routine data for ageing research [published online ahead of print, 2020 Feb 10]. Age Ageing. 2020;afaa018. https://academic.oup.com/ageing/article/doi/10.1093/ageing/afaa018/5733068, doi:10.1093/ageing/afaa01 (accessed 25 June 2020).
(8) Chi I, Chou KL, Kwan CW, Lam EK, Lam TP. Use of the Minimum Data Set--Home Care: a cluster randomized controlled trial among the Chinese older adults. Aging Ment Health. 2006;10(1):33-39. https://www.tandfonline.com/doi/full/10.1080/13607860500307712, doi:10.1080/13607860500307712 (accessed 25 June 2020).
(9) Adamis D, Devaney A, Shanahan E, McCarthy G, Meagher D. Defining 'recovery' for delirium research: a systematic review. Age Ageing. 2015;44(2):318-321. https://academic.oup.com/ageing/article/44/2/318/93348, doi:10.1093/ageing/afu152 (accessed 25 June 2020).
Competing interests: No competing interests