By Nathan Davies, on 31 July 2020
By Melvyn Jones
I have just co authored a BMJ piece on chest radiographs with Covid pneumonia – The role of chest radiography in confirming covid-19 pneumonia So why is a GP publishing about Covid radiology?
My wife is a radiologist with a special interest in chest radiology and a love of a good chest x-ray; back in March she was starting to see the x-rays of the first patients with covid pneumonia and she was shocked. She hadn’t ever seen x-rays like this. This was something really different.
There were real fears that hospitals would be overwhelmed and we knew clinicians who never normally look at a chest x-ray anymore were being marshalled in to support the covid response. Would they know what to look for on the chest x-ray? Could we do something to help? So I wrote to the BMJ pitching an idea on the 22nd March. They liked the idea and commissioned us to do a “Practice pointer”, not a traditional systematic review but an article based on evidence and clinical experience. I interviewed my wife to capture the key points and while she was on call went searching for good images. My literature search revealed 20 articles and only 1 related to Chest x-rays, there really wasn’t much out there. We had our submission ready and posted it on the 30th March and by that stage 1200 UK patients had died of Covid.
I needed to understand a bit of radiology to work though the literature. What is ground glass opacification (“the lung markings are still visible through the Covid changes”) and how it is different to consolidation- key concepts with Covid pneumonia. Covid lockdown meant the possibility of eating breakfast outside and thinking things through in a slightly less pressured environment. Should I admit to looking at the cloud formations during those few weeks of glorious weather? I did, I do. Cirrus clouds were my ground glass, I could still see the sky through these light feathery clouds, cumulonimbus was my consolidation; thick, opaque and ominous.
There then followed 6 revisions and further major changes requested by the team that ready it for publication. It went out to 7 different peer reviewers; many of whom made valuable but conflicting requests for changes but the overwhelming message was – this needs to be out there, now. We also needed input from a physician who was in the thick of it- how were they actually using imaging as part of their assessments of breathless Covid patient? I was working with James Piper – an Acute Medicine doctor at the Royal Free as part of the MB BS teaching programme and he was happy to help.
We turned round each iteration within 48-72 hours but still the requests for changes came. The numbers of UK deaths went relentlessly up. Eventually it was accepted, type set and finally published on the 16th July. UK deaths had now exceeded 45,000, Google scholar had hundreds of Covid articles and we were coming out of lockdown. It was a pleasure to see it finally published but there was a real sense that it was just too late. That’s the thing with the BMJ though; the day it was published it was downloaded over a 1000 times, two weeks later it has been viewed over 7000 times. The really helpful thing though for someone who is not a big user of social media, was seeing who Tweeted about it and where. The BMJ link had been re-tweeted 147 times and to places like South Africa, South America and India- all parts of the world which were now facing their 1st waves of this terrible disease and today the newspaper headline is “Europe faces its 2nd peak”. It may be of use to a clinician somewhere having to manage yet another patient with this awful disease, so may be we could and did do something?
By Nathan Davies, on 28 July 2020
In this post Dr Kirsten Moore, Marie Curie Palliative Care Research Department, UCL talks about dementia and supporting those living with demenita during the coronavirus pandemic.
Who is dying with Covid-19?
In April this year Covid-19 (coronavirus) became the most common cause of death in the UK. Office for National Statistics data showed that most deaths caused by the virus in England and Wales were among older people and those with underlying health conditions.
One fifth of people dying with coronavirus had dementia, making it the most common pre-existing condition. Also, the death rate from dementia was significantly higher in April than the previous five-year average.
How is COVID-19 impacting family and carers?
In the UK 700,000 family members and friends support someone living with dementia, providing 44% of the cost of care for people living with dementia1. Being a carer can negatively impact finances, stress and physical and emotional health. In our recent publication we highlight some of the end of life care challenges that coronavirus has created for families caring for a frail older person or someone with dementia.
A diagnosis of dementia often leads to reduced social interaction for both the person with dementia and their family carer. Social distancing and lockdown measures are increasing this isolation and loneliness. Carers may have additional worries supporting the person with dementia who may not understand the importance of shielding and keeping socially distant from others.
End of life discussions and planning
When a person with dementia lacks capacity to make decisions, families may be faced with difficult decisions about whether to send their relative with dementia to hospital or a care home for care, or whether to provide end of life care at home where they can be present with their relative. Alternatively, they may have these decisions taken out of their hands due to procedures and guidelines adopted to contain the spread and impact of coronavirus.
In advanced dementia communication may be limited for many months. Having discussions in the early stages of dementia gives someone with the condition an opportunity to express their preferences about end of life care.
There are many benefits to discussing our end of life wishes with our family and those who are important to us. They allow us to share how we want to be cared for and who we want involved in decision making if we can no longer make or communicate decisions.
These discussions can also help family feel more confident in making decisions if the person living with dementia lacks capacity. When family members are unsure what a person wanted at the end of life, they may worry they have made the wrong decisions or feel guilty if the person had an uncomfortable death.
However, these conversations are not easy. Discussing end of life is something most of us tend to avoid. It is difficult to face our own mortality. These conversations are also difficult because we don’t know what is likely to happen or what sort of decisions we, or our families, may be faced with. Often discussions tend to focus on resuscitation status, place of death or whether someone should be taken to hospital.
People who have dementia may find it difficult to imagine situations that they have not yet faced, such as difficulties swallowing and talking.
How can we support carers?
Simply keeping family carers involved and informed is an important way healthcare professionals, hospitals and care homes can support family carers. This may involve having conversations about place of care and end of life care.
There are numerous guides about difficult conversations, such as this Marie Curie blog. There is no one-size-fits-all approach, but the most difficult part is often starting the conversation. Healthcare professionals may be worried about raising end of life topics, that they may not have all the answers or that the family may not want to have these discussions. Carers, however, usually prefer an open and honest conversation, including being told that there may be uncertainty or no clear answers.
Being responsive to whether the carer is ready to have a conversation is important. There may be a pressing need for a conversation, but if discussions are raised at an earlier point in the dementia trajectory then it can give the carer more time to prepare themselves for discussing end of life.
What can carers do?
Family and carers may feel that if a conversation about end of life is needed, it will be raised by healthcare professionals. However, this may not always happen. Carers should feel reassured that if they have questions about the care of their friend or relative, that they should feel able to ask healthcare professionals for information and advice.
You may find it helpful to talk decisions out loud or write down a list of pros and cons. These simple strategies can help you clarify what is important or where you need more information or advice. It is important to get information from reliable and trusted sources. Make use of helplines such as the Marie Curie, Dementia UK or Alzheimer’s Society helplines.
Having a family member who understands how dementia progresses has been linked to a more comfortable death for care home residents. Keep in mind the best interests of the person with dementia if they lack capacity to make their own decisions. Think about their values and what would be important to them. It may not be realistic to follow all their wishes, so do not feel guilty if this cannot be achieved.
Developing a decision aid
To help guide families and carers in making some of the complex and challenging decisions raised here, our team at the Marie Curie Palliative Care Research Department at University College London are developing a decision aid.
We will be exploring the questions that people are asking Marie Curie and the Alzheimer’s Society to work out the biggest challenges facing people with dementia and their families during the pandemic.
We will then work with family carers, healthcare professionals and use existing research to develop a decision aid. The decision aid will help carers think about their current circumstances and provide relevant information to help inform their decision making.
1. Prince, M., Knapp, M., et.al. (2014). Dementia UK Update (2nd edition).
This blog was originally posted on the Marie Curie website, taken with permission from Marie Curie and Kirsten Moore. https://www.mariecurie.org.uk/blog/supporting-carers-dementia/277479
By Nathan Davies, on 22 May 2020
In this post Julia Bailey discusses the impact of Covid-19 on sexual health services and discusses sexual health online.
The Covid-19 pandemic has prompted an unprecedented shift to remote health services as a response to social distancing for patient and practitioner safety. Sexual health clinic capacity has been cut as staff have been deployed to other parts of the health service, and patients are now asked to contact health services by phone or video-link, with clinic visits reserved for a small proportion of people who need to be seen (FSRH guidance). People can also access online sexual health services for STI testing (+/- contraception), in areas where this service is provided.
The shift to remote consultations is likely to make it more difficult to offer holistic healthcare and health promotion. For example, patients welcome opportunities to discuss sexual wellbeing beyond physical health (e.g. sexuality, sexual difficulties, sexual pleasure), but picking up on this will be more challenging with less opportunity to notice non-verbal cues and to establish trust (e.g. whilst examining).
Resources via the Internet and mobile phone can offer private, convenient access to information, which may be particularly welcome for topics which can be difficult to discuss (e.g. sex, sexuality, sexual difficulties). Online sexual health services can offer efficient STI testing and treatment, but do not usually offer evidence-based sexual health promotion. Interactive (i.e. tailored) digital interventions are effective for learning and sexual behaviour change, and could be incorporated into online sexual health pathways.
There is no nationally commissioned digital sexual health programme, and digital innovation varies widely across the UK. There are thousands of health apps and websites, but only a tiny minority have been rigorously evaluated and it is difficult to know which to recommend – the NHS apps library curates trustworthy resources.
Digital sexual health resources for patients – some suggestions:
Before (or instead of) appointments:
- Covid-19: Accessing sexual health services
- Websites for young people: e.g. Brook, BISH, SexEtc
- Online information and advice: Sex and sexuality; Relationships; Contraception; STIs and HIV; NHS sexual health information
- Symptom checker: NHS 111 Online; Patient Info
- Decision aids (e.g. Contraception choices; Hormone replacement therapy)
- Videos prior to appointments (e.g. Implant insertion and removal; IUD/IUS insertion; Cervical smear procedures)
- Mobile phone apps e.g. for sex and pleasure, alcohol harm reduction, smoking cessation.
- Interactive digital interventions e.g. for condom use; STI/HIV prevention; sexual difficulties
After a diagnosis/ongoing support:
- Trustworthy patient information (e.g. herpes; genital warts; Hepatitis B, Hepatitis C; HIV)
- Electronic partner notification
- Text message interventions: g. for safer sex, STI testing; support after acute STI diagnosis
- Online support groups (e.g. HIV support; + Support Groups; Health Unlocked forum)
- Email or text reminders (e.g. for contraception or HIV medication including PrEP)
Tips for writing patient materials
- Don’t reinvent the wheel! Check what’s already available
- Involve target users to make sure material meet their needs, priorities and preferences
- Draw on principles of evidence-based sexual health promotion
- Address barriers to access, e.g. audio and video formats; material in first languages
- Address groups whose needs are often overlooked (e.g. women who have sex with women, trans, non-binary, intersex, and disabled people).
The post-pandemic ‘new normal’ will include digital health. There are some excellent online sexual health information resources available, and there is currently an unprecedented opportunity to offer evidence-based, tailored sexual health promotion to complement online and clinician-delivered sexual health services.
(This post was originally posted on the BMJ Sexual and Reproductive Health website who have provided permission to repost)
By Nathan Davies, on 22 May 2020
Families need more help to make quick decisions about the care their dying older relatives with dementia should receive during COVID-19, say UCL researchers, with the support of Marie Curie and the Alzheimer’s Society.
Many older people with COVID-19 will have dementia which affects 22% of people aged 85 and over1. They may experience a sudden deterioration with rapid onset of respiratory failure. Given the high death rates from COVID-19 in older people, even in hospitals, it is hard for people with dementia and their families to know what the best thing is to do about treatment and care options.
For those who lack the ability to make decisions for themselves, it may also mean that families have to make very quick decisions under stressful circumstances, for instance about resuscitation. They will also have to weigh up the pros and cons of either sending their elderly relatives to hospital for medical attention or receiving palliative care at home, where they may be more comfortable, and families will be able to maintain contact with them.
Having to make these difficult decisions can have a profound impact on the emotional well-being of family members, and lasting feelings of guilt and doubt if they made the right decision.
Researchers from the Marie Curie Palliative Care Research Department and Centre for Ageing Population Studies at UCL are producing an evidence-based guide, for family carers and people with dementia to use in the management of COVID-19. It is estimated that nearly half a million people with dementia in the UK live in their own homes2. Latest available data also shows that 38% of all COVID-19 deaths occur in people aged 85 and over (up to 24 April)3.
The research team hopes that the new guide will also ease the emotional burden that families can experience and help resolve any feelings of uncertainty about the decisions they have made for their loved ones.
Tracey Lancaster, whose mum is living with dementia said: “I’m dreading the call from the care home to say that mum has coronavirus. I worry about her fighting for breath and therefore we would have to decide if she goes into hospital or what care can be provided in the home. I’m not sure that I could make that decision. So, a decision guide like this one would be invaluable for me and my family.”
The rapid project, funded by an Economic and Social Research Council COVID grant and supported by end of life care charity Marie Curie and Alzheimer’s Society, will identify factors influencing place of care and death in older people as well as the key challenges and decisions which family carers of people living with dementia are facing currently in the COVID-19 pandemic.
The pandemic brings extra challenges to those who are ‘social distancing’ from their older relatives – and means that they may also need to make quick decisions over the phone with a professional they’ve never met.
Co-lead researcher Dr Nuriye Kupeli, Senior Research Fellow at Marie Curie Palliative Care Research Department, UCL Division of Psychiatry and an Alzheimer’s Society Fellow, said: “It is a difficult time for people living with dementia and their carers. Due to measures such as social distancing, self-isolation and shielding, people living with dementia and their carers may not have access to support and guidance when making difficult decisions. This work will help us to understand better how people living with dementia and their families are managing important decisions about care during COVID-19 and how best to support them.”
Co-lead researcher Dr Nathan Davies, Senior Research Fellow at Centre for Ageing Population Studies, UCL Institute Epidemiology and Health, and Alzheimer’s Society Fellow, said: “This is such an important project and follows on work we’re doing prior to COVID-19. Many families caring for someone living with dementia will be making daily decisions on behalf of their relative with dementia. But we know many will not have discussed or planned end of life care.
“The nature of COVID-19, which can worsen rapidly, means they will be forced to make quick decisions with potentially little support or information. They may be feeling overwhelmed considering what is best for their relative. The decisions they make may have a lasting impact on their grief and wellbeing: We want to try and help support carers with decisions to ease these feelings.”
The researchers say that having early and open conversations about end of life wishes with older relatives, particularly during COVID-19, could avoid potentially futile and burdensome interventions at the end of life while ensuring that loved ones get the compassionate care they need.
Marilyn Beattie, whose husband Gordon died in 2019, following a dementia diagnosis, said: “I felt like I was shooting in the dark most of the time. I didn’t know who to turn to, or what was available. It would have changed everything if I had an aid like this – a life-changer.”
Matthew Reed, Chief Executive of Marie Curie said: “At Marie Curie, we understand the value of planning ahead for the death of a loved one. However, when this isn’t possible, particularly during these uncertain times, it’s important that families living with dementia are properly supported to make difficult decisions and are not left with a legacy of grief and guilt because they’re not sure they made the right choice in a moment of crisis.”
Fiona Carragher, Director of Research and Influencing at Alzheimer’s Society said:
“Alzheimer’s Society are proud to unite with Marie Curie to support this urgently needed research. Covid-19 has severely affected people with dementia and their carers, and our Dementia Connect support line has been flooded with thousands of calls for help. This new, evidence-based guide will help carers and people living with dementia feel informed and supported, practically and emotionally, when making important decisions about care during the pandemic including hospitalisation, treatment and Do Not Attempt CPR.
“We know that the current crisis is making choices like these even more difficult which is why it’s so important Alzheimer’s Society researchers use their expertise to support people through this.”
By Nathan Davies, on 27 September 2019
We have a fantastic post below from Vennie an A-level student aspiring to study Medicine at university. She visited the department and shadowed some of our academics in their various projects in July. In this post talks about her experience and what she took away from it.
Dementia is an increasing problem especially with the growing older population in the UK. The awareness of dementia is rising, especially through the use of media and organised events such as Memory Walks. However, how much do we know about dementia?
Well, in simple words, dementia is the ongoing decline in the brain. This is only an umbrella term for 200+ different sub-types of dementia that exists, some of which you may have heard off. For example the most common two are Alzheimer’s disease and vascular dementia.
During my placement in the Research Department of Primary Care and Population Health at the Royal Free Hospital, I was able to shadow members of the team that are involved at different levels of research projects.
I discovered that there are many stages which make up the process of a research project. Starting with the planning and design of the research project, ethics, and recruitment through to finally analysing and presenting the results produced. Alongside all this and integrated throughout are processes to ensure the results are implemented into clinical practice and policy, to make a difference. I learnt about the different types of studies such as qualitative studies and large clinical trials. Due to the involvement of human participants including often patients from the NHS in the studies the department runs, a major part of the research process is the ethical application and review. The purpose of the review is to establish if the project has more benefit than risk to the person and their family as well as is the project being conducted sensitively. For all of this to happen, it may take 5 to 20 years to see a difference in practice and policy.
In order for, this project to be successful, a range of people are required to take part, which in turns bring a variety of skills into the mix. These individuals may include designers, programmers, clinicians, psychologists, sociologists, statisticians, qualitative researchers, and importantly patients and their family themselves. A few of the most prominent skills are communication, teamwork, determination and resilience. For example, a project with Dr Davies and Prof Rait I observed on producing a support package for people with dementia and their families, communication has a massive role to play. The project uses workshops with people with dementia, their family and professionals to develop the support package. There is a need for clear communication between the ranges of people for this project to progress smoothly. The communication may come in the form of discussion-based in meetings, emails and many other ways. Therefore, teamwork is essential as each person will have a special role in the project. Finally, determination and resilience are required from every member of the team as there will be challenges along the way, which could be out of your control that must be overcome. For example, if the project does not meet the criteria of the ethics committee it may be returned to the researcher, and his or her team must go back and amend the plan.
In conclusion, research of any kind similar to this project requires a range of people to be involved with a variety of skills that are vital for the research to work. This work experience has been a fascinating and exciting opportunity for me to experience what goes on behind the scenes of a research project.
“You, me and the Big D”: Changing attitudes to dementia in Whiteley Village through participatory research
By rmjlmcd, on 18 September 2019
In this post, Rachael Frost talks about her experience of conducting a participatory research project.
Whiteley Village is a retirement community in Surrey for people on low incomes. Dating back to 1917, the village provides housing, support and facilities for nearly 500 older people. Managed by the Whiteley Homes Trust, the village can support those with care needs in assisted living or a care home, but there are no dedicated dementia facilities. Despite this, a number of residents are living there with varying degrees of dementia. Although the village has a strong sense of community and residents can be very supportive towards each other, there is a sense that dementia is still stigmatised like cancer used to be (the old “Big C”) and that as a result, residents don’t receive the support they could from each other.
Enter Pauline, Mary, Peggy and Sue – four village residents who wanted to change this. In partnership with Dr Alison Armstrong from the Whiteley Foundation for Ageing Well and myself, we successfully applied for a British Society of Gerontology Averil Osborn Award for Participatory Research at the end of 2018.
The “You, Me and the Big D” project was a small research project designed to see whether Alzheimer’s Society Dementia Awareness Training would have a positive impact upon residents’ attitudes and behaviours to people in the village with dementia. Mary, Peggy, Pauline and Sue collected qualitative and questionnaire data from eight participants before and after the training, with qualitative research training and input throughout from Alison and myself.
So did anything change? Before the training, our participants told us that although they knew how to best support someone with dementia, they had plenty of examples from the village where this hadn’t happened. They felt this was due to lack of knowledge, village life (which could be supportive but judgmental), fear and the fact that different people with dementia had very different symptoms. Participants felt there was a need for more village support and wanted more information, particularly about dealing with aggressive behaviour.
“One day they might seem perfectly normal to you and the next day they’re not” (Barbara)
After the training, our eight participants felt like they had learnt quite a lot about different types of dementia and its other effects (such as on the senses and on balance), but wished to know a lot more than could be covered in three hours. For a couple of participants, it increased the worry about potentially aggressive behaviour from people with dementia. Some participants also reported issues with the training facilitation in that they would have liked to hear more from the speaker than others in the room.
“I’ve learned that there are different types of dementia which I hadn’t really considered and … people who have dementia are at different stages” (Camilla)
It was a great project to be involved in, although there were some challenges along the way! There was very little time to actually do the project (we received confirmation of the funding in January and had to present results at the British Society of Gerontology conference in July), particularly for training in qualitative interviewing and analysis, and very little budget. Some of the villagers weren’t receptive to the idea of other villagers doing research – with people saying “who do you think you are?” According to the village researchers, confidentiality was also a challenge in such a closed environment, as was having audio-recorders that were not very older person-friendly!
However, the benefits definitely outweighed these. Alison and I had a great time as the village researchers were so enthusiastic. Peggy, Mary, Sue and Pauline looked forward to our meetings and discussions, enjoyed learning and making a difference to the village and said they felt younger as a result. Mary and Sue came along to British Society of Gerontology 2019 conference and co-presented the project with Alison.
Of course, this was only a very small project. However, the main positive benefit from the Big D has been its wider impact on the village. Whiteley residents have been encouraged to talk about dementia more and dementia care has moved up the agenda with management. One person with dementia has even been able to move back into the village and live back with their spouse with better support. Further projects are being planned to improve dementia support in the village, so watch this space…
By Nathan Davies, on 16 May 2019
In a recent expose called ‘GPs: Why Can’t I Get an Appointment?’, a Panorama documentary, which aired on BBC1 on Wednesday 8th May, emphasised the current limits of and pressures on the NHS system. The programme featured interviews with overworked GPs and allied healthcare professionals, painting a rather bleak picture. Practices are merging and closing at an ever increasing rate. Patient loads increase as patient lists are subsumed. Patient multi-morbidities have increased the need for chronic conditions to be monitored with regular GP appointments. Yet on average patients wait a minimum of two weeks for a routine appointment. Early retirement and a limited flow of trainees into General Practice also contribute to the strain, making practice sustainability difficult to envisage. Inevitably, pressure and frustration are being felt amongst both patient groups and the primary care workforce.
Whilst those researching, working in and experiencing primary care within the UK will already be familiar with these factors, what has become a pressing concern since the 2015 publication of the BMA’s, National survey of GPs: The future of General Practice, is patient safety. At present only the most urgent of cases are seen quickly in General Practice. Yet still an unsafe number of patients are seen by any one GP in a day. This high demand placed upon GPs makes for little time to reflect on cases.
Enter- the release of the new GP contract and the NHS long term plan which intend to employ a multi-disciplinary army of healthcare professionals. Within this new way of working, workloads will be shared amongst staff, with greater efforts being made for both integration and collaboration. A typical GP’s day will begin to look very different. Micro-teams will have time to discuss patient cases, a GP’s time can once again be focused on the professional tasks only they can undertake and overall there begins to be a healthier outlook to teamwork.
Some promote this utopian vision of General Practice working unquestioningly. Pots of money, such as those made available through the Prime Minister’s Fund, have encouraged new ways of working with very limited evidence base. Yet one aspect seemingly unaddressed within the new plans is the disparity across patient access and levels of deprivation within the UK. In a recent report by the Health Foundation, GPs working in higher deprived areas see more patients compared to their counterparts. These are areas where recruitment of this new workforce will inevitably be harder. This raises questions about how best to incentivise recruitment so that patient access to care remains equal for all.
There is also a certain feel that these plans are being done to, rather than with GPs. We need only reflect back a few short years to the junior doctor protests to recall that in order for patient safety to happen, workforce perspectives must be accounted for. In order for the NHS to remain as successful as it has been and for the principles of Astana declaration to be realised, GP engagement rather than negation needs to remain central to all future planning activities.
Unequal access to care and a disruption to professional identities present major issues. But doing nothing is no longer an option. At a time when the NHS is so often synonymous with the words crisis and strain rather than success, a Utopian vision for both staff and patients may be both timely and necessary. Reifying this however, becomes a different matter all together.
By rmjlmcd, on 15 March 2019
In this post, Lorraine McDonagh, Sarah Blake, Fiona Stevenson, and Fiona Hamilton (on behalf of the DECODE study team) reflect on the unexpected consequences of researching unexpected consequences.
The DECODE (UnexpecteD Consequences Of Digital hEalth Tools) Study aims to explore the unexpected consequences (both positive and negative) of digital health technologies for patients, GPs and general practice staff. We are particularly interested in smartphone apps, online consultations with GPs, and patients having online access to their medical records. The project is funded by the NIHR School for Primary Care Research.
Late last year, we ran a workshop with members of the public/patients, researchers in the field, technology developers, and GPs to help identify areas we should be thinking about when considering the unexpected consequences of using digital tools in primary care. The findings of this workshop are discussed elsewhere, but here, we reflect on the unexpected consequences of researching unexpected consequences.
Setting-up the workshop proved more challenging than expected. We wanted to have equal numbers of people in each of our key stakeholder groups – patients, researchers, technology developers, GPs and practice managers. Accessing researchers and GPs interested in this topic was reasonably straightforward – possibly because most members of the DECODE team fit within one of these groups! However, we didn’t manage to recruit any practice managers, despite repeated emails and phone calls, keeping in mind that attendance was voluntary. We put a lot of effort into seeking out technology developers, we even signed-up for a Premium LinkedIn account and contacted developers directly but no one responded. Eventually, after exhausting all our contacts and trawling the internet, four technology developers agreed to come.
We planned to organise attendees by profession into mini-discussion groups, but on the morning of the workshop, three technology developers could not make it and had to drop out. We learned the one technology developer who turned up also had research experience so we decided to pair him with the researcher group. Unexpectedly, we soon learned that many people in attendance had multiple roles and could bridge across several of our pre-defined groups – for example, one patient was an ex-GP, one PhD student researcher was also a GP, and the technology developer was also a former GP.
Importantly, not all unexpected consequences are negative; we gained more insights than expected. For example, one GP gave an impromptu presentation of how well his practice has been using digital tools. At points, different competing priorities among the diverse stakeholder groups were evident, with some interested in the practical unexpected consequences, such as data security (the patient and GP group), and others keener on theoretical standpoints (the researcher group). To illustrate, one task was to discuss what potential unexpected consequences could occur from use of apps, online consultations, and patient access to electronic records. The researcher group felt that this required a literature review and directed their discussions towards devising a logic model for understanding unexpected consequences. The other groups, however, as anticipated when devising the task, drew on, presented and discussed their own experiences of digital health technologies.
Some members of the patient group were concerned about changes resulting from the increasing use of digital health technologies. Unexpectedly, the greatest ambition of these patients was to use digital tools to feel a sense of empowerment and autonomy in consultations and healthcare provision. They spoke negatively about paternalistic attitudes from clinicians and wanted to move towards more equal partnerships and involvement in decision making regarding their health. They felt this could also increase their safety and well-being, as technology would enhance their ability to self-monitor health. It is important to remember that these patients, who gave their time to share their views, are not necessarily illustrative of how every patient would feel. Some patient/public views remain absent from research, despite efforts to bridge these gaps. There are many reasons patient/public views can go unheard; people may be inaccessible due to vulnerability (e.g., those who are homeless, those with learning difficulties, those with languages other than English), or simply by being too busy to be heard (e.g., those with substantial caring responsibilities, those in full-time employment). Building an inclusive picture of patient/public voices remains challenging.
The key lesson we’ve learned from this experience was the power of combining individuals across key stakeholder groups. However, we are left wondering what voices have we missed? How do we know the unknowns? To shed further light on these issues, our colleagues at University of Oxford are conducting a conceptual literature review and colleagues at Universities of Bristol and Manchester are conducting interviews with patients, primary care staff and technology developers. Following on from which, we (the UCL team) will be carrying out another workshop with stakeholders.
The team is also keen to get as many views as possible on potential unexpected consequences of digital technology. If you have any insights related to these three types of technology or would like to comment on the unexpected consequences identified so far, please contact Andrew Turner or take part in Twitter discussions using the hashtag #DECODEstudy.
Health indicator recording in UK primary care electronic health records: key implications for handling missing data
By Nathan Davies, on 13 March 2019
In this post Tra My Pham talks about their latest paper which has investigated the recording of data in UK primary care electronic health records and the implications this has on conducting research using these records.
GP electronic health records provide a large amount of information and data for medical research. These information source help us to study individuals’ health over time, and offer many opportunities for research into populations that would otherwise be difficult and/or expensive to undertake.
Large UK primary care databases (GP electronic health records) capture information on key health indicators such as height, body weight, blood pressure, cholesterol level, smoking status, and alcohol consumption. These are relevant risk factors for many health conditions including diabetes and heart diseases, which remain leading causes of the global disease burdens. In primary care when patients register with their GP practices, it is typical that their past and current medical history is documented. Most individuals will have a record of the above health indicators as part of their registration. Thereafter, this information is mainly recorded if it is directly relevant to the patients’ care, ie, some patients will have several records over time while other will only have a few. Therefore, data can often be incomplete, which poses a challenge for their use in research. In this study, we aimed to further understand how common health indicators are recorded in the UK primary care setting, and whether there are potential implications for dealing with incomplete data in medical research.
We analysed records of height, body weight, blood pressure, cholesterol level, smoking status, and alcohol consumption from 6.3 million individuals aged 18–99 in The Health Improvement Network (THIN) database during the period 2000–2015. There were differences in the recording of these health indicators by sex, age, time since registration with the GP practices, and disease status. In particular, women aged 18–65 years were more likely than men of the same age to have these health indicators recorded, and this gap narrowed after age 65 (Figure 1). More than 60% of individuals had their health indicator data recorded during the first year following registration with their GP practices. After that, this proportion fell to only 10–40%. The recording of relevant health indicators were more regular among individuals with chronic diseases compared to those without, eg, body weight being measured more frequently for diabetes weight management (Figure 2).
Health indicator recording in general practices followed, to some extent, the GP consultation patterns by age and sex. In particular, younger women were more likely to see their GPs than younger men. Therefore, it seemed likely that for women, many weight and blood pressure measurements may have been taken in conjunction with their consultations for contraception and pregnancy. Our results suggested that many practices offered general health checks for their newly registered patients, during which patients’ health indicators were recorded. A GP incentive scheme was introduced in 2004, under which GPs receive financial payments based on quality targets and they have to record data, eg, health measurements, in order to meet these targets. Since this scheme began, many individuals with chronic conditions have had their health indicator measurements recorded on a more regular basis, which was reflected in our findings.
For health research studies using primary care databases, incomplete information on common health indicators will affect statistical analysis. In particular, analyses based on the available information alone may be misleading. It is standard in medical research to overcome the problem of incomplete data by using a statistical method called multiple imputation. The method involves using the data collected to estimate the unseen data (several times for each unseen value), so that analysis can proceed as though complete data had been collected. Based on the findings of our study, multiple imputation taking into account the differences in health indicator recording by individuals’ demographic characteristics and disease status is recommended, but should be considered and implemented carefully.
Our article and relevant references can be found at:
Petersen I, Welch CA, Nazareth I, Walters K, Marston L, Morris RW, Carpenter JR, Morris TP, Pham TM (2019). Health indicator recording in UK primary care electronic health records: key implications for handling missing data. Clinical Epidemiology, 2019 (11) pp. 157-167. https://doi.org/10.2147/CLEP.S191437.
By Nathan Davies, on 3 December 2018
In this post Melvyn Jones talks about how the iBSc in Primary Health Care students visit a local GP health centre and learn about who it was developed to meet the needs of it’s patients on the eve of World War II.
The words of a 1940s poster “fight for it now” and its gleaming image of Finsbury Health Centre directly linked fighting during that recent conflict with needs of soldiers and a beleaguered population for a better life after World war 2. The pre NHS Finsbury Health Centre which opened in 1938 on the eve of war, offered a model of community based health care away from the hospitals, to meet the needs of its very deprived population; burdened with poverty, malnutrition, lice, TB and rickets.
Roll forward nearly 80 years and the current batch of iBSc in Primary Health Care students were shown how this building was designed to meet the health needs of that time; with lead lined walls for the TB x-ray screening service, the solarium was there to prevent rickets and the layout was designed to help clinicians provide the best care they could (the corridors are bright and diamond shaped to encourage interaction between staff). Dr Marie de Souza, one of the GPs working in the practice discussed how in some ways they are still using this building to deal with similar issues (communicable disease like HIV, vitamin D deficiency due to poor diet and lifestyle) and some issues we still can’t seem to address- we were shown the reception rooms in the basement where homeless families were temporarily housed. Yet there are newer challenges like the increasing burden for people with poor mental health. Rooms that once were used to de-louse bedding are now used to provide CBT. There are considerable constraints involved in providing 21st century health care from this grade 1 listed building (Lubetkin’s architectural master piece). A repair must look like an unsightly repair (so the building can be “read” by the streams of architectural students), a picture can’t be hung without permission from English Heritage, the door locks can’t be updated because the lead walls are indestructible. And yet, today on a sunny November morning, the light flooded in through the expanses of glass; glimpses of that gleaming 1940s image of hope.
The students were encouraged to think how they might shape the health service for the next 80 years and how the buildings we might get to design could reshape the care we could provide.