The healthmatters blog; commentary, observation and review
“This is a tragedy – the NHS had made huge strides to treat and care for patients promptly but the latest figures show a further deterioration – and behind those figures lie real suffering for patients and exhausted staff.
“The danger now is that efforts to transform services that government has rightly been championing are derailed because of all the effort that has to go into keeping the service going and trying to balance the books.
“The immediate priority is additional funding for social care – this is a system that is letting down more than one million elderly people who are not receiving the support they need – the result is overstretched hospitals having to cope with too many admissions and too many patients unable to be discharged. There is a similar story in mental health – which has yet to see the benefit from warm words of support from national leaders.”
Following today’s study from The University of Maryland, which found a one off 30 minute exercise session can ward of cardiovascular disease, Vitality has found that by going one step further and increasing your activity to the Government recommended 150 minutes a week, could prolong your life expectancy by more than three years.
- Making small improvements and behaving as an ‘Everyday Athlete’ can improve life span by more than three years.
- Based on analysis of 6,600 members over the course of 12 months, Vitality found that previously sedentary members who increased their activity levels to the Government recommended 150 minutes a week saw their life expectancy boosted by more than three years (3.1 years).
- Members who increased their activity levels to 90 minutes saw an increase of almost three years (2.7 years) and exercising just 60 minutes a week saw an increase of more than two years (2.4 years).
- The main barriers preventing people from taking part in sport or exercise include time constraints (31%), the expense (21%) and people not enjoying it (19%).
- Rewarding physical activity has a direct impact on both kick starting activity and encouraging people to continue being active.
- Since introducing rewards such as cinema tickets and Starbucks beverages for completing exercise, more than a third of members (34%) who had previously been registering as inactive are now engaging in physical activity.
- This was even more profound for those members who were already active, with the introduction of rewards prompting a six fold increase in those reaching weekly activity targets.
Vitality Ambassador Jessica Ennis-Hill said: “Being an Everyday Athlete doesn’t mean you have to run a marathon or climb a mountain, it just means changing everyday behaviours such as walking up the stairs rather than taking the lift, or getting off a bus stop or two early to walk the rest of the way to where you want to go. This campaign shows how easy it is for people to make small changes that can really benefit their short and long term health.”
Take to the streets! British Medical Association action 4 march 2017
The British Medical Association is encouraging its members to join the protest against NHS cuts on March 4th with this synopsis of damage done to the health service:
- 2014/15 spend on NHS £135 billion = 7.3% GDP. By 2020/21 this will decrease to 6.6% amongst lowest of any OECD country
- We have fewer beds, 2.8 per 1000 pop than almost all OECD (Germany 8.3, Poland 6.6) in 2011 and STP plans are to decrease this between 5 and 20%
- We have fewer doctors, around 2.8 per 1000 than most of Europe (only Slovenia, Romania and Poland have less)
- Current spend per head per year in England = £ 20657, lower than other European country
- The Five Year Forward View estimates a funding gap of £30 billion per annum by 2020/21. To close the gap the government have proposed £10 billion extra funds and £22 billion efficiency savings. However, when the Health Select Committee (Chaired by a Conservative MP) examined the figures, for current year its actually £4.5 billion
- The important fact to hold on to is the eye watering £22 billion “efficiency” savings = cuts.
- Hospital deficits grew form £859 million in 14/15 to £2.54 billion in 15/16. PFI is a significant contributor to the deficits (eg Barts Hospitals Trusts, the biggest PFI in the UK, pays approx. £2 million a week in interest payments)
- The 4 hour A&E target is now only 88.4% (target was 95%)
- Delayed discharges are >25% up from last year
- Number of emergency admissions have gone up by 2.9% (this at a time when all efforts are being made to keep people out of hospital) suggesting that it’s the truly ill who are attending A&E
The great and the good
Sir Robert Francis QC delivered a stinging rebuke to health secretary Jeremy Hunt and the NHS’s senior management in a recent interview with the Health Service Journal, arguing that the NHS was facing an “existential crisis” and that “depressingly familiar” pressure on the NHS meant it was “inevitable” that mistakes that led to the Mid Staffordshire scandal would happen again. He warned that the Five Year Forward View and Sustainability and Transformation Plans were “unrealistic” and a “make do and mend” attitude was “neglecting adult social care”. Elsewhere Lord Carter, the efficiency tsar, likened NHS policy makers to a dog watching television, saying: “He can see it, but he doesn’t get it.” (www.hsj.co.uk 10th February 2017)
Sir David Dalton, chief executive of Salford Royal Foundation Trust and Pennine Acute Hospitals Trust, has ten solutions for the NHS’s inertia problem that make it clear where the problem lies.
- The organising scale for hospital services should change to serve a population footprint of around one million. Reducing the number of ‘sovereign’ providers allows quicker strategic decision making, pooling service-line workforce and better use of estate, across multiple providers/sites, to assure delivery of better and affordable care
- Decision making takes too long, with 238 trusts determining their strategy for their limited catchment area. Inertia prevails when providers put their own organisational interests ahead of the population they should serve. This ‘power of veto’ should be removed and the role of a provider should be reset to deliver operational excellence to agreed quality standards.
- We should quickly consolidate inpatient surgery, especially high risk surgery, into single surgical centres serving populations of around one million, with 24/7 consultant availability.
- The number of CCGs should reduce significantly.
- Primary care needs investment and support but it must become part of a single-governed and accountable system for neighbourhoods of around 50,000 people
- Safe and affordable social care must be found for our most vulnerable citizens and provided ‘free at the point of need’.
- Investment in ‘digital’ is a must.
- The sheer volume of performance targets distorts real priorities. Current targets should be replaced with locally selected key performance indicators (from a national thematic list)
- Staff satisfaction should become a principal metric for assessing a board’s performance.
- Many staff are showing signs of fatigue and helplessness. New workforce supply strategies that result in safer staffing levels are needed. From the HSJ February 8th 2017
Funding the NHS
Research published by Price Waterhouse Cooper (PwC) suggests that half the general public would pay more national insurance to help improve NHS services. Only a quarter of people were opposed to the suggestion.
The research, commissioned by PwC recruited 2,000 nationally representative UK adults (aged 18+) to take part in an online survey. The research was conducted between 8th – 11th November 2016 and results were weighted to nationally representative criteria.
The public is clear that the ‘free at the point of use’ principle must be maintained:
- Only 26% of people believe that treatment of conditions which are predominantly caused by lifestyle choices should be funded in part by the patient.
- However, 29% believe that the NHS should not fund treatments that only benefit people by a small amount.
Overall the findings show that confidence in the NHS needs to improve:
- Just 16% of members of the public surveyed believe the NHS has become more efficient in the past 5 years – 45% disagree that it has become more efficient.
- The proportion of people who believe the quality of health services should take priority over balancing the books for hospitals has increased to 76%, up from 68% last year.
The PwC poll asked 2,000 people about their preferred options for easing financial pressure on the NHS including options around prevention and incentivisation – the most popular suggestion was immunisation becoming compulsory where it is known to prevent illness, except where the person is allergic to immunisation (66%). The second most popular suggestion from the members of the public surveyed, at 52%, was that people who are given advice to lose weight to help their condition should not receive any other treatment for that condition until they lose the weight.
HS Improvement said some NHS trusts were applying “unacceptable rules” to delay or restrict ambulance access to hospital emergency departments. A letter from NHSI to Trusts has reached the Health Service Journal. It said that NHS Trust chief executives must really take the problem of delayed handovers from ambulances to A&E departments seriously, giving it “their immediate attention”. The letter also directed Trust CEO’s to ensure that all handovers taking over an hour were escalated to ‘higher echelons’, at the time they occurred. Did somebody say “micro-management”?
In 2013 NHS England publically anticipated that between 40 and 70 of the existing 185 A&E departments would become “major emergency centres” with the rest becoming “emergency centres”. Emergency centres would be capable of assessing and initiating treatment for all patients whilst major emergency centres would be much larger units, capable of providing a range of highly specialist services.
The controversial proposal was opposed by many senior emergency doctors, and seems to have been shelved before the 2015 general election because of the political fuss likely about closing or downgrading A&E departments. There were also doubts that service centralisation was so beneficial, except for stroke, heart disease and neurosurgery. The Health Service Journal has recently investigated plans for re-categorising A&E departments and concludes that about 24 downgrades are likely (HSJ 6th February 2017) – not enough to transform the NHS but plenty to get the ambulances queuing and the media catastrophising.
<h3>Money: now you see it, now you don’t</h3>
On 24 January, NHS Trusts were told by NHS Improvement that their capital spending plans for the rest of 2016-17 were unaffordable. On the same day, reports the Health Services Journal, NHS England encouraged Trusts to apply urgently for digital technology funds that needed to be spent before the end of March 2017. Soon after Trusts submitted formal expressions of interest NHSE announced that the funds had been withdrawn. This is how NHS ‘planning’ works, by wasting management time in rushed applications that are all too often pointless.
Medical tourism is in the news as the Department of Health seeks to tax ‘medical tourists’ in advance for non-urgent medical care, but medical tourism runs both ways. For example, the number of UK residents seeking fertility expertise reached 51,266 over the past year, according to private healthcare search engine WhatClinic.com. Almost six out of ten (59%) enquiries were for overseas clinics. The top five medical tourism hotspots for Brits seeking IVF treatment abroad were Spain, Czech Republic, Turkey, Ireland and Greece and prices range significantly. The average price for IVF in Czech Republic is £821 while in Spain it costs £3,360, on average.
In a landmark case the Court of Appeal has ruled on the side of patient choice versus medical paternalism. Hearing Sebastian Webster v. Burton Hospitals NHS Foundation Trust , a case brought by Heather Butler after her son Sebastian suffered serious disabilities following his birth at Burton Hospital, the Court decided his mother’s wish to be induced should have been followed. The consultant obstetrician, under whose care she was under, believed that she should have a normal delivery. Following the precedent set by the decision of the Supreme Court in Montgomery v. Lanarkshire Health Board , the case constitutes the first appellate decision where the Court of Appeal has emphatically ruled in favour of patient choice.
The Court of Appeal found that it was for the patient to decide the risks they wished to take concerning their body – including the risks posed to an unborn child. The role of the doctor, the Court ruled, was as a medical advisor and not the decision maker. They set out the standards of advice which medical practitioners must give to patients to enable them to make appropriate choices. The advice which is given must be clear, comprehensible, it must deal with the alternatives which are available to the patient and, importantly, the advice must be given dispassionately and without seeking to pressurise the patient to a particular course of medical treatment. It was not a defence for the doctor to say there were other doctors who would have acted in the same way. Older News from Nowhere moles who can remember the feminist movement in the 1980s to de-medicalise childbirth might have expected all these conflicts had been resolved. Sadly, not.
British employers are losing on average 27.5 days of productive time per employee each year as unhealthy employees take more time off sick and under perform in the office as a result of ill-health (otherwise known as presenteeism). This is equivalent to each worker losing more than an entire working month of productive time annually. When translated into monetary terms the combination of this absence and presenteeism is costing the UK economy £73 billion a year in lost productivity.
Research from Britain’s Healthiest Workplace (BHW), surveying more than 34,000 workers across all UK industries, has explored the link between employee ill-health (primarily driven by lifestyle factors such as smoking or poor nutrition) and short-term productivity loss. The findings identified not only that healthier employees tend to be more engaged and more productive, but when people make improvements to their health over time, this directly leads to significantly improved productivity.
The study, which was developed by VitalityHealth and is delivered in partnership with the University of Cambridge, RAND Europe and Mercer, also shows many employees mistakenly believe they are healthy. The study measures health in terms of exposure to risk factors, which occur when an individual is outside the healthy range for a lifestyle factor such as exercise or diet, or a clinical factor, such as blood pressure or cholesterol. The results showed that 68% of respondents have at least two risk factors, while a third are suffering from three or more. 63% of those with three or more risk factors believe their health to be good or very good, which makes them less likely to change their behaviour. Vitality’s member data has shown that lifestyle behaviour change is most pronounced when people recognise the need for change, and are therefore motivated to do so.
Encouragingly, BHW data also shows that workplace wellness programmes can support employees to improve their health. Average time lost per employee due to absenteeism and presenteeism at the top 20% ranked organisations in BHW was over a week less than for the bottom 20%. As companies increase their investment in health promotion, the proportion of employees in good or excellent health grows, while the costs to productivity associated with absenteeism and presenteeism decrease.
Shaun Subel, Strategy Director at VitalityHealth, said: “The findings of Britain’s Healthiest Workplace not only demonstrate the scale of the UK’s productivity challenge, but point to an exciting alternative in the ways employers can manage this problem. Traditionally, we have seen that employers looking to boost the productivity of their business often focus on measures such as the automation of human tasks or process re-engineering to pursue efficiencies. While these measures are important they have definite trade-offs in terms of cost, sustainability, and potentially being perceived negatively by employees. Health and wellbeing, on the other hand, is an area where this trade-off does not exist – while wellbeing interventions can be of relatively low cost compared to the alternatives, they deliver tangible improvements in employee engagement and productivity, and are typically viewed positively by employees. Together, these ultimately lead to improvements in a business’s bottom line.”
“There are now a strong group of employers who recognise that societal trends have changed,” said Chris Bailey, Partner at Mercer. “They know that people are living and working with multiple risk factors attributable to modern life, and understand that organisations have great influence in setting shared values and behaviours – both positive and negative. Those employers enabling positive health choices and behaviour in the workplace are seeing real benefits as they reduce lost productivity and give themselves a competitive advantage.”
Registrations for Britain’s Healthiest Workplace 2017 have now opened. Britain’s Healthiest Workplace is the UK’s most comprehensive workplace wellness study. Its approach is unique in that it uses employer and employee surveys to draw the link between the workplace and employee wellness engagement, and measures the impact of this engagement on health and productivity outcomes.
Since inception in 2013, 400 organisations and 100,000 employees have taken part in the study, across a wide range of industries, regions and demographic groups.
To find out more about Britain’s Healthiest Workplace and to register for the 2017 survey: https://www.vitality.co.uk/business/healthiest-workplace/
The national disability charity Sense has repeated its call for urgent government investment into social care. The action follows today’s report from the National Audit Office (NAO), which revealed that the ‘Better Care Fund’, designed to incentivise the integration of health and social care and deliver better outcomes or patients and service users, has failed to meet its first year targets 2015/16.
The NAO report shows that demand for health and social care services has grown faster than resources can manage. There was an increase of 87,000 emergency hospital admissions (2014/15 – 2015/16) and an increase in delayed transfers of care of 185,000 over the same timeframe, despite plans in the Better Care Fund to reduce them.
The report also highlights that NHS England has failed to properly assess how pressure in social care can impact the NHS.
Richard Kramer, Deputy Chief Executive at Sense, said:
“Since 2012, spending on the NHS has increased 11%, while expenditure on social care by councils has decreased 10%. Cutting social care means that more demand is placed on the NHS, and it is patients, and older and disabled people that suffer.
The situation unfortunately looks set to get worse, with our social care system chronically underfunded, the deficit predicted to grow to at least £2 billion by 2020, unless action is taken.
The consequences of doing nothing are clear; without long-term integrated planning and significant new funding into social care; more and more people will be left without the essential services that they need to live independently and in their communities.”
Social prescribing is missing an opportunity to help people with long-term health conditions into meaningful work, Work Foundation report finds. The new report from the Work Foundation – part of Lancaster University – promotes this in supporting clients with long-term health conditions back into meaningful work, arguing that the services need to play a far greater part in achieving this goal.
Social Prescribing: A Pathway to Work? found that employability and work-related outcomes need to become a core aim of social prescribing services, with greater recognition required for the important role that work plays as a social determinant of health and wellbeing.
Social prescribing is a means of enabling healthcare professionals to refer patients to a non-clinical service, who will work with them to co-design “non-healthcare interventions” to improve their health and wellbeing. There is growing evidence that social prescribing, where patients are linked into a variety of community activities, improves self-confidence, self-efficacy, and reduces social isolation. As this report shows, this can also support people onto the pathway back to work.
The report includes a survey of members of the Social Prescribing Network, ascertaining their views on how well employment is currently being championed within this context. The majority (70 per cent) of respondents agreed that employability and work-related outcomes should be included in the specifications of social prescribing services. Overall, respondents believed there was real potential for social prescribing to better help clients achieve work. However, the majority also felt that work was not currently optimised within the system as employment was seen as low priority goal for social prescribing services, and limited formal recognition or support available to achieve it.
Authors also looked in detail at four social prescribing organisations, showing how they are supporting people to find and prosper in work, and how they can be supported to do more.
Karen Steadman, Research and Policy Manager at the Work Foundation, said: “Social prescribing services should more directly recognise getting clients who want to work, back to work, as a key aim – whether this is in the short or long-term. More emphasis must be placedon the role of meaningful work in sustainably reducing social isolation, improving self-confidence, and self-esteem, and improving health and wellbeing.
“However, we must show caution before tying such an approach too closely to the welfare system: in order to help those who most need it, we must listen to what they want, and support them on their pathways.”
New data – announced in February by Nuance Communications – has revealed that nearly half of NHS Trusts (43%) are investing in artificial intelligence ( AI ) enabling patients to ‘self-help’ when accessing services. The Trusts are harnessing technology such as virtual assistants, speech recognition technology and chat-bots to ease the pressure on healthcare workers across their organisations.
This new insight – obtained from a Freedom of Information (FoI) request issued to 45 NHS Trusts, with 30 responding – also found that the vast majority of NHS workers are still reliant in some way on pen and paper to build patient records, with 93 per cent admitting staff still hand writing reports in their Trusts and also 93 per cent of Trusts (28) depend on traditional word processing tools for staff to type up electronic patient records (EPRs).
Research commissioned by Nuance in 2015 into the impact of clinical documentation in NHS acute care trusts revealed that clinicians spent over 50% of their work day on clinical documentation. In a more recent Nuance study of UK GP Practices over 90% reported that patient documentation was a considerable burden for their practice and that in 49% of the practices over half their patient documentation is paper versus electronic format or the use of AI.
However, by deploying technology – such as speech recognition and AI – clinicians are enabled to process clinical documents quickly and accurately, without the need to outsource transcriptions or hire additional secretarial support. Technology has proven to free up vital resources to focus on patient care and reduce the burden of administration for clinicians.
Alongside investing in technology to improve efficiencies inside the hospital, allowing staff to work flexibly can also play a key role in driving up productivity. Encouragingly, the FoI request also found that nearly half (47%) of trusts now allow staff to use mobile devices to develop patient records, saving those working in the community valuable travel time and expense.
60 per cent of the eighteen responding trusts also stated that at least some staff have access to the use of speech recognition technologies to build diagnostic reports and update patient records.
Commenting on these latest findings, Frederik Brabant, MD, Chief Medical Information Officer at Nuance, said:
“Deploying technology such as AI to enable patients to self-help is an important step forward to providing the best possible care – ensuring employees can manage the more complex ailments directly with patients, while giving easy access to information for everyone.
“With staff across the NHS already under enormous pressure to deliver first-class services – typically exacerbated in the winter with disease-levels peaking – access to supporting technology to ease this pressure will be key.
“Yet many clinicians are still forced to spend half of their time documenting patient care. While it is encouraging that some departments within Trusts are using tools like speech recognition, with nearly all of them still reliant on pen and paper in some form, there is a significant opportunity to drive up this usage across the board.
Our goal is to bridge the gap between clinicians and technology, freeing them to focus on their patients”.
As the NHS battles to cope with a target to switch to electronic patient records by 2020 it may be time to ask whether the deadline itself is unhealthy. In a world where the amount of data is exploding and demand for the health service is soaring it’s easy to see why the government has been so anxious to modernise the way we keep records. After all, few people – whether patients or clinicians – truly believe paper-based systems are the best choice to survive and flourish in a digital age.
In reality, however, hospitals continue to rely on the old ways despite successive government campaigns to modernise their systems. Large technology programmes such as the NHS National Programme for IT (NPfIT) and “Care.data” have certainly not inspired confidence, with both being cancelled despite a lot of effort and money spent on them.
Now the government wants the electronic patient records that once targeted for 2007 in place within four years. Can it happen? Well, anecdotal evidence suggests a lot people in the NHS take the attitude ‘we’ll believe it when we see it’.
The first hurdle is simply getting the buy-in of key users. Many consultants and GPs remain unconvinced – patient records may be two inches thick but it is still possible to thumb through them and find what you want. An electronic record, with 200 images, is a bigger challenge.
In an ideal world, people would instantly choose the more modern and efficient electronic patient record option. In the real world of resource limitations and legacy patient records – not to mention ingrained working practices – a simple switch over is not going to happen.
So, the diagnosis is clear, the symptoms are obvious – but we really need a different course of treatment. A sensible diet of good habits and localised but coordinated change including local stakeholders is more likely to succeed than major surgery. There is no single big bang technology fix available – certainly not one that is affordable – and back-file scanning of old paperwork is unlikely to be cost effective. In that light, recognising that legacy systems and processes will be around for longer than most people would like is the key.
Joining the paper and digital worlds together is not impossible – in fact it is absolutely essential to ease the transition to fully digital patient care. Eventually doctors can be augmented by intelligent systems which will bring a whole new set of processes and cultural challenges to healthcare worldwide – not just in the NHS. But before we get there we need to rework the NHS and all the types of information it currently uses.
Will we be paperless by 2020? It’s highly unlikely. So it’s time to live in the real world and make paper and digital work seamlessly together. Here are ten top tips on the long road to a paperless NHS:
- The first priority should be to examine the options of “digital first”. Is it possible to combine paper and digital in the short term to future-proof data in healthcare but without making a painful impact on service?
- Consider implications of the forthcoming EU General Data Protection Regulation. This regulation provides extra rights for European citizens to ask to see their data and to ask for it to be edited. So one of the biggest hurdles we face is how to make data shareable and searchable.
- Utilise new systems to link consultants’ diaries to accessible patient records.
- Convert as many physical records into digital records as possible but beware of assuming that scanning all records is the answer. This is an expensive option and, as it does not often undergo OCR/ICR (text recognition), a scan is not always searchable. Without careful indexing and metadata being added (often a costly exercise) this provides significant problems.
- Consider storing records offsite, releasing space back for core activity. Outsource the management of onsite records to an expert.
- Analyse where digital can be most easily and effectively utilised to cope with modern demands and improve the standard of healthcare.
- When a patient appointment is made it can kick off a process to recall the necessary paperwork. Rather than being delivered on paper this could be scanned and made available at the necessary time. Over time only the most recent electronic records would be needed but for now a hybrid approach in some areas should not be discounted.
- Utilise systems to link physical and digital records.
- Think about future technology and how it might affect record keeping in years to come. Health-tracking apps and web resources offer huge potential to the health of the population. As do smart buildings and wearables with sensors built into our living environment. New systems need to be able to cope with these innovations.
- Put systems in place to prevent data breaches.
Trusts probably won’t admit they lose records, but they do. Not in the sense that they are left on the streets or on the Tube – most are lost somewhere inside a hospital. Many NHS employees don’t see this as ‘lost’ or a as a data breach – but patients and the regulators may think differently.
John Culkin, Director of Information Management, Crown Records Management
Breast cancer patients and prostate cancer patients talk very differently about their cancer online and receive significantly different levels of online support, according to social listening research* commissioned by Teva Pharmaceuticals Europe and published ahead of World Cancer Day on Saturday, 4th February. Based on this research, Teva has launched an online cancer portal called My Day (MyDay.eu.com) that aims to help cancer patients and their caregivers learn about their condition, connect with their online support community, and have productive discussions with their physicians. The website, named ‘My Day’ to reflect the unique journey each cancer patient experiences, is guided by an independent, medical advisory board to ensure the portal provides content of value to cancer patients and their physicians.
- Research identified over 20,000 online cancer conversations over the past 3 years
- Analysis shows prostate cancer patients focus on ‘technical details’ while breast cancer patients make greater use of ‘emotional’ language – pointing to differences in progression, diagnosis and treatment of these two cancers
- Research also reveals women with breast cancer receive significantly less online support than men with prostate cancer
- Teva launches ‘My Day’ online cancer portal to support patients in their online cancer conversations
These differences between breast and prostate cancer conversations may partly be attributed to differences in the progression, diagnosis and treatments of these two types of cancer. Prostate cancer is typically treated with a watch-and-wait approach, delaying time to prostatectomy to preserve quality of life for as long as possible without risking the cancer metastasizing to other parts of the body.
Furthermore, prostate cancer patients often have access to a urologist as well as an oncologist to further ‘crowd-source’ their knowledge and ideas about the best treatment path forward. Based on the social listening research, prostate cancer patients appeared to trust themselves to collate this ‘crowd-sourced’ information from their peers and medical specialists and to partner with their physician to make the right treatment decision. Also, unlike with other types of cancer, prostate cancer patients have relatively concrete assessment tools – such as Gleason scores and the Prostate-Specific Antigen (PSA) test – that help men recognise the points at which it’s time to make a treatment decision. These concrete tools also provide prostate cancer patients with common ‘data points’ they can refer to in sharing their stories online with fellow patients.
However, for breast cancer patients, the complexity of tumour types and the lack of relatively simple assessment tools may make it more difficult for women to share ‘technical details’ of their cancer online. Women with breast cancer often reported they were not told by their healthcare professionals the path forward and that they were surprised by secondary treatments prescribed without forewarning. The breast cancer discussions indicated physicians frequently recommended unilateral mastectomies followed by hormone treatment or chemotherapy. Breast cancer patients did also go online to crowd-source potential treatment decisions when a physician did not seem clear enough or said something that sounded ‘off’, and expressed a desire to use that information to partner with their physicians. If breast cancer patients gave voice to fears or anger within their online community, they warned peers that they’re going to speak in negative terms. By contrast, they frequently reminded peers to ‘stay positive’.
Patients and their caregivers are playing a more direct role in managing their health, with social listening conversations and discussions happening more and more online. Connecting with fellow patients and caregivers in virtual online communities can be a source of comfort – but it can also impact discussions with physicians, when online peers advocate unfounded treatments. Understanding the types of cancer conversations happening online is key to helping healthcare professionals have productive, face-to-face conversations with their patients.”
The European cancer portal MyDay was launched in late 2016 with local language versions of the portal being launched in individual European countries during the course of 2017.