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    WHO COVID-19 Database

    WHO is gathering the latest international multilingual scientific findings and knowledge on COVID-19. The majority of citations referenced are published journal articles. The global literature cited in the WHO COVID-19 database is updated daily (Monday through Friday) from searches of bibliographic databases, hand searching, and the addition of other expert-referred scientific articles. Particular emphasis is placed on identifying literature from around the world. Multiple search strategies that are under continual revision are used to obtain this global perspective. New research is added regularly.

    Available since January 26th, a more powerful search interface has just been launched on the 14th of April and can be accessed at the following link:

    https://www.who.int/emergencies/diseases/novel-coronavirus-2019/global-research-on-novel-coronavirus-2019-ncov

    The WHO evidence retrieval sub-group has begun collaboration with key partners to enrich the citations and build a more comprehensive database with inclusion of other content. Future improvements are envisioned on improve the end user’s experience.  The database is built by BIREME, the Specialized Center of PAHO/AMRO and part of the Regional Office’s Department of Evidence and Intelligence for Action in Health.

    For further information or questions, please contact the WHO Library via Library@who.int

    Tomas ALLEN

    WHO Library

    World Health Organization

    Geneva, Switzerland

    Posted by Jean Smith on behalf of Tomas Allen with thanks to Sue Thomas.

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    Patients still make enquiries at busiest hours, despite 24/7 online access

    · University of Warwick publishes first independent evaluation of one of the main providers of online consultation platforms

    · Targeting services at younger patients and those with general administrative enquiries could be most effective

    · “In reality, patients were seeking access to health care at the same times and for the same sort of problems than they did using traditional routes.” Says supervising author.

    Patients are using online consultations in the same way they would arrange a consultation via traditional means, a new independent evaluation by the University of Warwick reveals.

    Despite this, the study identifies several opportunities to tailor online platforms to specific patient requirements and improve their experience.

    Primary care researchers from Warwick Medical School have today (26 March) published the first independent evaluation of one of the main providers of online consultation platforms in NHS general practice. Published in the British Journal of General Practice, it provides independently analysed information on the types of patients that are using online triage systems, how and when patients are using this platform, and what they think of it.

    Online triage is a system in which patients describe their problems via an online form and subsequently are telephoned by a GP to conduct a telephone consultation or arrange a face-to-face consultation. Practices aim to respond within one hour of receiving the request.

    The researchers examined routine information from 5140 patients at nine general practices using the askmyGP platform over a 10 week period. Highest levels of use were between 8 am and 10 am on weekdays (at their highest on Mondays and Tuesdays) and 8 pm and 10 pm at weekends, mirroring the busiest time for patients contacting their practice via telephone.

    Supervising author Dr Helen Atherton, from Warwick Medical School, said: “With online platforms there is an assumption that having a 24/7 ability to make contact with a general practice will cater to those who wish to deal with their health problem at a convenient time, often when the practice is shut, and that being online means they will perhaps share different problems than they would over the telephone or face-to-face.

    “In reality, patients were seeking access to health care at the same times and for the same sort of problems than they did using traditional routes. This suggests that patients’ consulting behaviour will not be easily changed by introducing online platforms. Therefore practices should be clear as to exactly why they are introducing these online platforms, and what they want to achieve for themselves and their patients in doing so – the expectation may well not meet reality.”

    The NHS Long term plan sets out that over the next five years all patients will have the right to online ‘digital’ GP consultations. The main way these are being delivered is via online consultation platforms. The online platforms claim to offer patients greater convenience and better access and to save time and workload for GPs, however there is currently a lack of independent evidence about their impact on patient care and care delivery.

    Patient feedback analysed as part of the study showed that many found the askmyGP system convenient and said that it gave them the opportunity to describe their symptoms fully, whilst others were less satisfied, with their views often depending on how easily they can normally get access to their practice, and on the specific problem they are reporting.

    The study found that two thirds of users were female and almost a quarter were aged between 25 and 34, corroborating existing evidence. The commonest reason for using the service was to enquire about medication, followed by administrative requests and reporting specific symptoms, with skin conditions, ear nose and throat queries and musculoskeletal problems leading the list.

    The researchers argue that practices should avoid a ‘one size fits all’ approach to implementing online consultations and should tailor them to suit their practice populations and model of access, considering whether it is likely to add value for their patient population.

    Dr Atherton adds: “Individual online consultation platforms are uniform in their approach, patients are not. We found that patient satisfaction is context specific – online consultation is not going to be suitable for all patients and with all conditions and that one approach is unlikely to work for everyone.

    “Practices could focus on encouraging people to deal with administrative issues using the platform to free up phone lines for other patients. It could be promoted specifically to younger patients, or those who prefer to write about their problems and not to use the telephone. Clear information for patients and a better understanding of their needs is required to capture the potential benefits of this technology.”

    · ‘Patient use of an online triage platform; a mixed-methods retrospective exploration in UK primary care’ published in the British Journal of General Practice, DOI: 10.3399/bjgp19X702197

    1 Comment

    The following article was first published in the Camden New Journal on 06 December, 2018

    A private company being promoted
    by government to recruit patients to its doctor service spells ruin for the whole-person integrated care we need from the NHS, argue
    Susanna Mitchell and Roy Trevelion

    The sneaking privatisation of our National Health Service now aggressively threatens our GPs. In Camden and across London, we all need to be aware of the long-term harms this development will cause GPs and primary care NHS services.

    Last year, a global multinational corporation called Babylon Healthcare – owned by a former Goldman Sachs investment banker and Circle Health CEO – established a “digital- first” business called “GP at Hand”.

    Disastrously for the NHS, Babylon Healthcare Services Ltd can be traced back to a holding company in Jersey, the offshore tax haven.

    GP at Hand is contactable through a mobile app which uses standard calculations as a symptom checker. Unfortunately NHS England have not provided our existing practices with this software.

    Instead any patient registering with this commercial enterprise will be deregistered from their normal GPs. And, although the GPs employed by the company can also be accessed by video or phone, this process delivers no continuity of care or whole-patient assessment.

    Continuity of care is a cornerstone of general practices. However, Matt Hancock, the health secretary says, “If we need to change the rules to work with the new technology then change the rules we must.”

    In addition GP at Hand’s own promotion material actively discourages older people from registering. Explicitly these are those who are frail or living with dementia, or in need of end-of-life care. Pregnant women and those it describes as having complex social physical and psychological needs are also discouraged from signing up.

    In other words it is “cherry-picking” young and healthy patients who will be more profitable to its shareholders. Its use of standard practice via information technology, and the easy access it offers, is particularly attractive to the young.

    Of the 31,519 new patients who have signed up with GP at Hand over the past 12 months, 87 per cent are aged between 20 and 39 years, while patients over 65 now make up just 1 per cent of the population registered with the service.

    All this poses serious problems both for patients and general practices. In the first place, our present primary care system consists of GP practices committed to whole-person and integrated care for everyone in their local communities. Healthcare services are organised around geographic areas to enable better co-ordination with hospitals and social services.

    In contrast to this, GP at Hand fractures this fair and impartial community-based model, registering patients who live or work anywhere within 35 to 40 minutes of one of the clinics. In addition, should any of their patients require more complex care, they will no longer have their own GP to turn to.

    Secondly, by picking the most profitable patients, GP at Hand drains money away from ordinary GP surgeries. Normal GPs are funded according to the number of people on their patient list and this funding is combined into a single budget to provide the services they offer. This means that funding from the roughly 80 per cent of patients who remain reasonably well helps to pay for the 20 per cent who are elderly, who are chronically sick, or have multiple illnesses.

    But if the “capitation fee” of the young and healthy is scooped up by a for-profit company like GP at Hand, it will critically undermine the funding available to surgeries. This will leave practices to deal with the sick, the frail and the old on a much reduced budget.

    Shockingly this commercial entity is funded by NHS England. It can be commissioned through our clinical commissioning groups (CCGs).

    It’s expanding fast, and already has over 35,000 patients. Currently the corporation operates out of five clinical locations in London including one in King’s Cross. Plans for rolling it out nationwide are under discussion. It is also advertised widely, with the health secretary Matt Hancock recently announcing that he has registered with the company.

    Future developments in information technology and artificial intelligence that can be useful to our public health systems should be funded directly towards our existing GP surgeries.

    It should not be used as a vehicle for profit-making by private corporations at the expense of our NHS.
    We need to make the dangers of adopting this business model clear to the widest possible public. We must encourage those who care about our publicly-funded NHS to boycott Babylon’s GP at Hand.

    We need to bring public pressure to bear and end this attack on a valued and trusted institution that serves us all.

    The NHS has always been for the benefit of everybody. It must be kept that way.

    • Susanna Mitchell and Roy Trevelion are members of the Holborn & St Pancras Labour Party and of the Socialist Health Association.

    2 Comments

    Nick Bostock reports at GPonline that:

    Under-pressure GPs are delivering ‘remarkable outcomes’ on cancer

    You can read the complete article here. Nick reports:

    GPs ‘can take a lot of credit’ for marked improvements in early cancer diagnosis and reductions in the proportion of cases detected as an emergency, according to a cancer expert.

    In the year to March 2018, the proportion of cancer patients who first presented at hospital as an emergency fell to 18.8% – down from 21% in the year to December 2012.

    Over roughly the same period, cancers detected at an early stage increased significantly – rising from 46% in 2013 to 52% by mid-2017, according to figures from the National Cancer Intelligence Network (NCIN).

    However: GPonline reported earlier this year on research showing that GPs were as good as consultants at making appropriate use of cancer diagnostic tests – and yet pledges to give GPs direct access to four key diagnostic tests – blood tests, chest X-ray, ultrasound and endoscopy – have not been delivered in many areas.

    Isn’t it about time that GPs were also given access to the new technology for GP consultations via mobile and Skype? This is currently being ‘rolled out’ by GP at Hand. Here’s a transcript of the R4 Today programme 13 September at 6 mins to 9:00 am (I made this transcript and I believe it’s a fairly accurate job – but any mistakes are mine):

    (Int) Interviewer

    AP (Ali Parsa, CEO Babylon – parent company that runs GP at Hand)

    RV (Dr Richard Vautrey, Chair GP Committee, British Medical Association)

    SoS = Secretary of State

     

    (Int): So Ali Parsa just explain to us how your App works.

    (AP): So, we have a very simple service. So, what it does is allow patients to check their symptoms whenever they want. To make an appointment with a doctor within seconds, to be able to see a doctor within minutes. In fact, I was just checking my App and it says that if I want to see a doctor I can see one at 9 o’clock today, in the next few minutes.

    (Int): You mean ‘see’ over the phone?

    (AP): Over the phone. And if you want to see somebody physically then, you can go see them that very same day. It is open 24hrs a day, 365 days of the year. And it is available for the same price the National Health Service pays any other GP. What we have done is to solve the problem of accessibility and the continuity of healthcare – using technology and what the SoS and the NHS is doing today is celebrating that and promising it for the whole country.

    (Int): And Richard Vautrey, this is something which patients complain about again and again, isn’t it, access to their GP, so is this kind of App the solution?

    (RV): We have real concerns, as well as patients do, about the inability of many practices to be able to offer enough appointments and that’s simply because we haven’t had the funding over the last decade to support the expansion of the health service to be able to meet the growing needs of our patients. What General Practices are doing right now is seeing thousands and thousands – if not a million – patients today offering, you know, face-to-face consultations and seeing them in their surgeries, so that’s when patients approach them today. So that’s happening right now. What we haven’t got is the resources to be able to offer some of the IT technologies in every single practice. And the SoS’s commitment to IT is welcome, but we need to see that commitment translated into resources provided to enable every practice to offer this type of consultation.

    (Int): But could this kind of technological approach actually help some of the pressure on GPs because people would consult a doctor over the phone rather than going to the surgery.

    (AP): Well many practices, if not most practices, already offer telephone consultations. What they haven’t got is the IT kit to be able to offer smart phone consultations, or Skype-phone computer consultations, any many would like to be able to do that, if the technology was provided to them. But the other big difference is that every Practice that is open today will see any and every patient who lives within their area, and we have concerns about the model of which GP Hand has been built, which is primarily about looking at some of the relatively mobile healthy patients and not accepting every single patient who lives within their area.

    (AP): I’m afraid Richard that is simply factually not true. We will ask when patients started the service, to ask patients to seek advice if they want to change their GP Practice to our Practice, if they have any clinical issues. Most patients seek advice and join us – we look after them, young, old, sick, healthy, our patients are across the border, and we don’t do that just in Britain, remember we look after one third of the population in Rwanda, and we do so in the United States, we do this in Canada. . .

    (Int): But specifically, on this idea of whether you cherry pick patients, it’s likely that patients who don’t have very serious health problems, and maybe younger, are more likely to want to use an App on their mobile.

    (AP) . . . but, why is that? If the patient is not very mobile, if the patient is very old, if the patient can’t wait a few weeks to see their GP, they’re significantly more likely to use a service that is continuously available. Many of our patients have mental health issues – they can’t wait for a few days or a few weeks to see their GP. That’s why they switch to us. A thousand patients today will choose to apply to GP at Hand, and then switch their GP Practice – one every three minutes.

    (Int): Richard Vautrey, some GP Practices are worried about the fact that if their patients sign up to GP at Hand they then lose that funding, don’t they?

    (RV): That’s exactly right. And the way that General Practice is funded at the moment is a balanced mechanism, so those patients who use the service less, and there are many patients that use the service more, and that overall, that compensates one for another. What we have concerns about is that this would effectively replace a personal service with an anonymous call centre and patients don’t want that.

    (Int): And finally, Ali Parsa, this was something that commissioning groups in Birmingham were worried about and that was clinical safety – isn’t it better to see a doctor the next day.

    (AP): No, it wasn’t clinical safety, you do see a doctor, not a call centre, face-to-face on your mobile and then see one in one of our surgeries. We will open up across the country physical surgeries, their issue was not that. It was an IT hitch that doesn’t allow its screening to be done with your local hospital and that IT hitch has been fixed. This is the future, and I encourage more and more patients to join it.

    (Int): Okay thank you both, we’ll leave it there, let us know what your think via twitter.

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    Update 2/5/17: If you are concerned about GP records, see this post


    In matters of health and care, your relationship with your doctor is based on a very human spirit of confidentiality. Not the cold law of data protection.

    Any large, formal system is bound to breach the Hippocratic Oath; “First, do no harm”. Data doesn’t care. In a purely digital world, a thing either is or it isn’t – with no nuance. Smaller systems, talking to each other, offer more discretion for the humanity of your situation. It is  why fax machines still work better than e-mail for the NHS.

    Patients routinely find themselves in one of the following three real-world scenarios. Human situations get ignored by the database designers’ visions, forgetting the real world::

    • When a doctor cannot tell their patient the full story without causing distress – such as when at test returns a  likely false positive result.
    • When a doctor cannot tell another doctor something – such as where  they’ve been asked not to by their patient.
    • When institutions cannot tell doctors relevant details – e.g. in situations where there is “too much data, but no clear information”.

    When you are between diagnosis and treatment, which (if any) of these three apply may change hour-to-hour. Human choices are a reality, usually ignored by by those who want to copy records across a lifetime.

    medConfidential defends the confidentiality you desire for your medical records.

    Why is Confidentiality more than Data Protection?

    “Data Protection” was a 1980s response to the advent of new computers and the copying of data. Transparency was the balance intended to ensure that processing is “fair”. When copying was limited to “faster photocopiers”, organisational boundaries were maintained, and confidentiality questions rarely engaged.

    Modern communications has created the capacity to copy medical records at a scale that shatters confidentiality.

    Confidentiality, and trustworthiness, is based on patients’ expectations of boundaries. And so, as data subjects, any processing that breaches duties of confidence cannot be considered Fair – so cannot be lawful.

    medConfidential defends the confidentiality you desire for your medical records.

    If you do have concerns, it is still safest to opt out now to exclude your data. You can always opt in later. For more information on what you can do, please visit our How to opt out page.

    We also take donations.

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    On 15 April 2018 Doctors of the World (DOTW) and the National AIDS Trust (NAT) issued a joint statement that called on NHS Digital to immediately stop sharing patient details with Home Office immigration authorities.

    DOTW and NAT believe that sharing confidential patient information with the Home Office will deter vulnerable migrant groups from seeking antenatal care or urgent care for infectious diseases.

    Here is the DOTW statement:

    MPs repeat demand for an end to NHS Digital sharing patient data

    The House of Commons Health & Social Care Committee has, for a second time, called on NHS Digital to immediately stop sharing patient details with the immigration authorities. Expressing deep concern about the Government’s approach to sharing confidential patient information, a report released by the Committee on 15 April stated: ‘we believe that patients’ addresses, collected for the purposes of health and social care, should continue to be regarded as confidential.’

    The report also states the Committee’s lack of confidence in the leadership of NHS Digital, citing the failure of NHS Digital to act independently of Government and its disregard for the underlying ethical implications of this data-sharing.

    Currently, the Home Office receives information about patients from NHS Digital, the body charged with safeguarding patient data. The data is used to trace migrants, which creates a climate of fear where vulnerable people – including pregnant women and those who have been trafficked – are too afraid to access healthcare.

    DOTW (Doctors of the World) UK and NAT (National AIDS Trust) have been campaigning for an end to this practice since it came to light in 2014. Both charities gave evidence in the Health & Social Care Committee’s initial hearing on the issue.

    Lucy Jones, Director of Programmes at DOTW, said: “In our clinic, day in day out, we see the incredibly harmful impact the data-sharing deal has on our patients. It has reached a point where people do not want to give the NHS their contact information out of pure fear. While confidentiality is in such a precarious state, mothers are not accessing the antenatal care they need, public health is put at risk, and we fear this is only going to get worse”.

    “Doctors of the World UK stand with the Health Select and Social Care Committee in opposing this dangerous information-sharing deal between NHS Digital and the Home Office, and are thrilled the Committee has taken such a strong stance. This view is also shared by the British Medical Association[1] and the Royal College of GPs[2]. As a healthcare charity, we believe in the right to healthcare for all. Yet this immoral deal works to scare some of the most vulnerable people in society from seeing a doctor.”

    Deborah Gold, Chief Executive of NAT said: “It is scandalous that our data is being shared and our privacy corroded with less and less justification. As an HIV charity, we understand the importance of treating infectious conditions and limiting the spread of epidemics. When people can’t trust the NHS with their data, that good work is undone and we face a public health risk. There is nothing to be said for this practice, which deters people from accessing healthcare.

    “Data sharing should have been stopped when the Health & Social Care Committee first called for it, and it certainly should stop now they have, for a second time, demanded an end to this short-sighted and unethical practice.”

    Sign our #StopSharing petition to support our NHS Doctors and tell NHS Digital they are NOT Border Guards:

    https://www.doctorsoftheworld.org.uk/stopsharing-campaign

    [1]https://www.bma.org.uk/news/2018/january/patient-information-shared-with-immigration-officials

    [2]http://www.rcgp.org.uk/-/media/Files/News/2018/RCGP-letter-to-NHS-digital-from-chair-march-2018.ashx?la=en

    The Commons Health Select Committee says:

    Dr Sarah Wollaston MP (Chair): NHS Digital are an organisation that the public need to have absolute confidence will respect and understand the ethical principles behind data-sharing [and they] have not shown us at all that this is part of what [they] are considering’.

    Dr Paul Williams, MP for Stockton South and a practicing GP, questioned “what advice would you give to clinicians about what they should inform their patients so that this information is classed “with consent”?’

    Luciana Berger, the MP for Liverpool, Wavertree urged NHS Digital to reconsider, calling the deal ‘a matter of life and death’ for an extremely marginalised and vulnerable patient group. 

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    Patient Information Forum

    Objectives

    By the end of this session, participants will have a greater awareness of:

    • their own knowledge and interactions with health information
    • the importance of health literacy and accessible information
    • good quality health information resources
    • resources and techniques to help assess the quality health information
    • supporting material and organisations

    What is the Patient Information Forum?

    • The Patient Information Forum (PIF) is the ‘go to’ UK membership organisation and network for people working in, and involved with, healthcare information and support. We are not-for-profit and independent.
    • We have a network of over 600+ members, representing every kind of information and support producer and provider, including the NHS, voluntary, commercial, academic and freelance sectors.
    • 89% of respondents in the 2017 PIF membership survey said they strongly agreed or agreed that they would recommend PIF membership to a friend.

    What does PIF do?

    • We provide support to individuals and organisations to help them provide the best health information for patients.
    • We deliver practical resources to increase expertise for all those who share our vision, including delivering events, online discussion groups and a weekly e-newsletter.
    • We influence to ensure improving the quality of health information is high up on the agenda across the whole NHS and health sector
    • We work on projects, with patients and clinicians, to map their perfect patient information journey
    • We provide a best practice toolkit and updates to support the creation of high quality health information.
    • We highlight research and reports on key health information topics.

    Producing Health Information for Children

    The information PIF sends out is wonderful and it lets me know that I am not alone and I get fantastic insights on what others are doing in the same areas of communication and engagement. Then it’s a case of not re-inventing the wheel. If anyone’s looking for help and information and education, this is a great organisation.

    Perfect Patient Information Journey

    Why do we do it? 

    • We believe high quality health information is the cornerstone of achieving the best experience for patients, and putting them in control of their well-being, treatment and care.
    • We know that getting health information right is good for the patient and good for the NHS. It improves patients’ outcomes and saves the NHS money.

    Our 2013 report, Making the case for information, outlined tangible benefits of investing in high quality patient information, including reduced GP demand.

    Is knowledge power?

    Patient views on the information they were given

    • 36% felt they were not given helpful information at first diagnosis
    • 32% find it difficult to access trustworthy information on their condition
    • 20% felt they did not have enough information to feel confident in discussing decisions about their treatment with their doctor

    I wasn't a typical case

    I wasnt given enough information to make a choice

    I ask a lot of questions

    Providers of online health information need to be aware of the searching behaviour of patients and their carers. Access, or lack of, to online health information and the literacy to be able to understand it, is causing a disparity in health outcomes.

    • Access to the Internet
      • UK has highest proportion of households with Internet access (82%)
    • Searching behaviour
      • More likely to search if they have chronic conditions
      • Disparity due to poverty and lack of Internet access
      • Knowledge of clinical terminology
    • Quality of online health information
      • Incorrect information leads to poor decisions
      • No requirement to adhere to quality standard
    • Shared decision-making
      • Involved patients are more likely to be compliant

    Accessible Information Standard

    • From 1st August 2016, all organisations that provide NHS care and / or publicly-funded adult social care are legally required to follow the Accessible Information Standard.
    • The Standard sets out a specific, consistent approach to identifying, recording, flagging, sharing and meeting the information and communication support needs of patients, service users, carers and parents with a disability, impairment or sensory loss.

    Quality tools

    The Information Standard Information Standard

    Kitemark launched in 2009 – Now owned by NHS England

    Six aspects of producing good quality information

    1. Information production process
    2. Evidence sources
    3. User understanding and involvement
    4. End product
    5. Feedback
    6. Review

    discern online  – Assessing quality

    • Checklist of 16 questions
    • Authorship – Who wrote the content and what are their credentials? Are they qualified to provide this information?
    • Attribution – is it clear how the information was generated, e.g. is it referenced?
    • Disclosure – is the web-site sponsored by anyone who might have a commercial gain? When did they write it? Who did they write it for?
    • Currency – is there a date to indicate age of the content?

    Consumer health information sources

    PIF resources

    PIF supports members with a range of events, a weekly e-newsletter which rounds up health information news, and resources including:

    • PIF website and Toolkit – which includes resources on communicating risk
    • Accessible Information Group – established to support people involved in implementing the new mandatory NHS England Accessible Information Standard (AIS)
    • Events – Shared Decision Making, Digital Health Information, Communicating Risk

    Presented at our conference Empowering Patients with Information Technology

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    NHS England are seeking views on the impact of data-sharing arrangements under the memorandum of understanding (MoU) on the health and healthcare-seeking behaviour of migrants.

    This consultation closes at 5pm on 30 March 2018

    Evidence can be:

    peer-reviewed publications
    narrative accounts
    case studies
    more formal analyses using qualitative, quantitative or mixed methods

    https://www.gov.uk/government/consultations/data-sharing-mou-between-nhs-digital-and-home-office-call-for-evidence

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    SHA deplores the weekend actions of computer hackers that caused the paralysis of large parts of the NHS in England and Scotland, placed patients at risk, and in some cases brought to a halt some ongoing operative and diagnostic procedures. SHA pays tribute to the NHS staff that coped so magnificently with such interference and those who toiled over the week end to restore services.

    SHA notes that the Welsh NHS was not especially affected and believes that this is due in no small measure to the integrated way in which  primary and secondary care services are planned, delivered and supported in Wales which removed the internal market and its damaging effects over a decade ago. SHA also understands that the technical resilience of NHS Wales was in no small measure due to the priority given, over a number of years, to investment in NHS Wales IT systems and to the role of its central NHS IT support team.

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    The transformative effects of the world-wide-web and the digital revolution are everywhere. Lives of citizens have been revolutionised as access to the web has completely altered how people connect and communicate with each other. The information technology revolution continues to challenge traditional ways in which human beings trade, communicate, organise, investigate, learn, and how they project themselves. The current political landscape is characterized by at least two interesting developments: political problems such as those surrounding the economy and environment are becoming more transnational, and citizens now have a capability to operate on their own terms rather than as members of traditional hierarchical interest and advocacy organizations.

    digital revolution

    Against this fast-moving and ever-changing background, in February 2016, the House of Lords agreed to continue the ancient practice of storing all British laws on vellum. Politics and politicians deserve what the digital revolution is doing to them: Western political systems have hardly changed in generations and are ripe for disruption. Cash for questions, expenses scandals, endemic corruption are all expected consequences of power: but enforced austerity by unelected technocrats, international migration crises, and lost opportunities for generations of young people demonstrate that political systems’ behaviours whose roots are nineteenth-century are incapable of identifying, let alone implementing solutions for our age. Narrow self-serving and self perpetuating elites who, in partnership with conventional media, have been peddling their self-interested version of reality now rage against the digital machine.

    Some of this is easily explained. Whilst the pace of government is cumbersome and slow, technology is fast-moving and dynamic, making politics seem tired and dull. Political thinking is lame by comparison with the big ideas coming out of the information technology industry. Advances in software have thrown up fresh ways to think about what it means to own something, to share something, to be a citizen, to have a private life, and how to self-identify. These are among the most important questions of modern politics. However, they rarely get expressed by politicians or conventional political parties.

    Whilst politicians wrestle with how to “manage” digitization, it continues to produce huge benefits in many parts of the world. In Nigeria phone-based banking for the first time permits money transfers without the physical exchange of cash, massively enhancing wealth-generating possibilities. In China, a billion phone users now pose an existential treat to the monolithic communist power structure. The Arab Spring, Tahir Square, and the Occupy movement: all were driven forward by a new generation of activists exploiting social media. Watch migrants unload in Lampedusa: a few possessions and a phone. Less propitiously, emergent terrorist organisations such as ISIS have understood from their outset that the power and influence of the web – the development of a digital caliphate – is key to dissemination of their violent message and the recruitment of adherents. In some cases, these changes are occurring either despite government opposition or because of bad government; more generally though governments seem not even relevant or incidental to these changes. They are simply encircled by them.

    Governments have not though ignored the digital revolution. They have utilised the techniques of e-commerce and big business for their own narrow purposes, spending heavily on algorithm-based data mining to target election campaigning and political advertising with the aim of securing and retaining power. Ironically, of course, as the focus of politicians becomes ever more targeted on the key swing voters, districts, and constituencies, then the greater the distance between politicians and the people becomes, and the more people turn on to digital. Politicians have also been busy, as Snowden revealed, regularizing the mass surveillance of its citizens: listening-in but not listening to. And they have, thirdly, simply blamed and ridiculed digital communities, caricaturing them as short attention span clickbait zealots; populists who don’t understand the complexity of achieving change in a pluralistic system.

    Conversely, the digital revolution in politics is another healthy sign that ordinary citizens haven’t given up on politics. In some respects, digital activity has been translated into a proliferation of political activity both within and beyond the traditional outlets. Particularly in countries with more plural systems, the internet has been influential in promoting emergent parties. The German Pirate party and Italy’s Five Star Party make good use of digital technology to manage their message (as ever, the medium is the message).

    Nevertheless, it is certainly true that as the membership of mainstream political parties has fallen away and voter turnout has declined across the western world, irregular political campaigning has expanded. Concerned individuals often coalesce around issues that reflect their own interests. The new information technology has been an enormous help in this regard, enabling ad hoc pressure groups to form and allowing like-minded individuals to find each other and share their concerns. But this too creates an imbalance between the political class and the rest. Professional politics is becoming more concentrated – witness the emergence of the modern political dynasties – at the same time citizen politics is becoming more fragmented.

    But it needn’t be like this. Democracy functions best when citizens get good information about what their government is doing. Widespread transparency makes citizens better and more active participants and makes politicians more accountable. Democracy, at least in its ideal form, promotes equality of power. Democracy promotes debate. Democracy can bring together individuals with high diverse viewpoints. Debate and deliberation forces people to improve and strengthen their arguments. It is axiomatic to me that many of the major problems facing governments today are complex and multi-faceted, requiring negotiation, compromise, but also clarity about goals. Bringing people together is what the internet does: democracy is the function of harmonising discrepancy, of managing disagreement, and of legitimising leadership and authorising progress. Here are four proposals to unlock the full potential of democracy as a collective decision-making institution in the age of the Internet.

    Firstly, the role of technology companies can and should change, but this requires leadership from within. Facebook’s community is larger than many countries, and the magnates running such companies have the power to change them for the better. Do they have the will though? Mark Zuckerberg’s new year message hinted at insight into his personal disconnect from reality. He should take responsibility for the content of what Facebook circulates, and see himself as a leader not a tech geek. Most important, Facebook should not allow such stories to be presented as news, much less spread. If they take advertising revenue for promoting political misinformation, they should face the same regulatory punishments that a broadcaster would face for doing such a public disservice.

    Secondly, there is a role every user of digital technology can play. The internet has made us less trusting of our own judgements (and those of experts) and more deferential to the wisdom of crowds. A rebalancing is needed in the way we calibrate our understanding: sure experts get it wrong; but so do mass hysteria crowds. The solipsistic echo chamber that is Twitter and Facebook thrives on selective affinity: “I like you because you agree with me”. Perhaps an individual, helpful response is to be more Socratean, welcoming what we do not know or understand, happy to acknowledge our limitations, but eager to learn.

    Thirdly, collectively, we need to recognise that social media is here to stay but that it can also be a huge positive. Social media can shine the light of transparency on the workings of a Trump. Was Hillary Clinton really replaced by an alien in the final weeks of the 2016 campaign? We all need to be able to see who wrote this story, whether it is true, and how it was spread. Rather than seeing social media solely as the means by which Trump ensnared his presidential goal, we should appreciate how they can provide a wealth of valuable data to understand the anger and despair that the polls missed, and to analyse political behaviour in the times ahead. Valuable democratic opportunities are created on social media when people use them to talk to politicians and civil servants, and to each other. Social media radically reduce the cost and difficulty of people organising themselves, forming ‘communities of interest’ united by a shared concern, whether a common complaint about a local NHS service, opposition to a local planning application, or a suggestion for a traffic calming measure.

    Finally, and lastly, there is the issue of what government can do. There are emerging expectations for MPs to listen to and engage with people on these channels. Politicians need to use social media to learn more about the needs and views of their constituents, and as a gateway to more sustained contact with their constituents.

    Like all successful politics it starts at the local level: social media users are more likely to contact their local politicians – a local councillor or constituency MP – than national politicians. The public debate is on social media and Parliament should catch up. Listening to these gives an opportunity to bridge national institutions with street-level social reality, fashioning new instruments in gathering and understanding social attitudes on politics and policy. Therefore, every parliamentary debate should have a social media element to allow the public to offer their views and opinions for the benefit of the participants. Numerous social media platforms support the streaming of live video, allowing viewers to tune in and comment on debates in real time.

    Government can also help prepare the digital users of tomorrow for a world in which facts are contested more than ever. As Peter Hyman wrote recently: “In a world of “alternative facts”, how can we give young people the skills to shine a spotlight on the truth?” We need education to promote questioning, critical thinking and critical analysis of evidence and the news as a defence against the worst excesses of the internet.

    In conclusion, a health warning about our fascination with digital: we’ve been here before. The death of democracy was widely predicted with the advent of mass-circulation newspapers and then again with the broadcasting of Parliament. And, of course, not everyone shares that fascination with digital. The explosion of new digital practices has occurred within a social context where many are excluded or unwilling to participate in such practices. Not everyone uses social media – including some of the poorest and most vulnerable in society. Political change is a hard grind, requiring face-to-face contact, and development of political and community relationships over years, not seconds. Technology is not a panacea for the problems democracy faces.

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    Information technology is increasing the opportunity and roles for citizen and patients within their own health. Electronic health records are becoming available to all citizens and patients. The knowledge and skills necessary for citizens and patients to benefit from access and contribution to their records is emerging rapidly and guidance is appearing. (RCGP guidance and DH work stream) The patient provider relationship is evolving to reflect this within the United Kingdom and in countries in Europe. Information, personal data, knowledge and understanding are becoming ubiquitous. (Bill Gates New Year) Primary education has become a universal experience. Mobile and information technology is becoming easily available to citizens who are empowered to take actions that impact positively on their own and their family’s lives. These actions are at times in opposition to the messages of commercial advertising that citizens receive through the media.  The twentieth century has been described as the century of the self. It was brought in with the early engagement with psychology, global markets, telephony and the motor car. It went out with a sense of uncertainty “all watched over by machines of amazing grace”. (Adam Curtiss – BBC2) 
     
    Just as for the extension of human rights and animal rights, the progression of expert autonomous patients has been a long and hard one with obstacles along the way – not least obstacles created by patients themselves. Ivan Illich suggested that doctors had misappropriated patients’ health. To some extent this is true just as Victorian engineers appropriated the right to design and build tunnels, bridges, factories, drains, reservoirs, dams and other engineering projects in the nineteenth century. But it is also true that citizens and patients are happy to accept a passive and fatalistic role in their own and public health leaving what is without doubt their responsibilities to the media, the market and to their highly paid professionals. Professionals will in fact do no more or no less than they are paid for whereas patients and their families and friends are able to do more for themselves than ever before.
     
    Public and environmental health is a consequence of behaviour, nature, markets, culture and technology. The developed World is at the end of one stage of its economic growth and is facing recession, mass migrations, global warming, increasing food costs and population growth worldwide. Markets will be required to adapt as the world’s human population increases by two and a half billion people in the next forty years whilst advertising and the markets encourages all people to expect the levels of lifestyle of the developed world. The planet unfortunately cannot support such lifestyles for all.
     
    Modern lifestyles are producing new problems to deal with. An older population has more illnesses and incapacity to be helped with. There are less young people to help older people. Urban life is causing more mental health problems. Physical inactivity, over consumption, drug and alcohol abuse, obesity, diabetes and related pathologies are market, culture and lifestyle induced. These problems are to some extent the result of the perfect safe, comfortable life that is afforded by cheap and safe transport, central heating, telecommunications and leisure. It seems that all play and no work makes Jack a sick boy. Bodies have evolved to cope with work and stress and require some regular use to remain in shape.
     
    High profit shareholder companies and costly technological medicine are progressing at a time that the WHO (reference) advises responsible authorities to invest in lower cost primary care, health promotion, prevention and public health. 
     
    Health management is a biological imperative for all species and for every individual. Each “family’s” day to day life – eating, sleeping, socialising exercising – is driven by biological and cultural behaviour. Lives incorporate healthy and unhealthy behaviours and choices. Secondary health activities occur alongside citizens’ daily health behaviour in modern societies. These include the management of urgent problems, continuing care, preventative care and the promotion of good health and health seeking behaviour. This latter is to reduce the negative effects that environment and lifestyles can have on patients’ lives.
     
    One strand of improved efficiency in service provision worldwide may be the introduction of electronic health records allied to the education of billions of confident, enquiring skilled, patients and carers. Citizens will learn to manage and improve their own health data and to work as partners with health commissioners and providers. They will also become experts in their own and their environment’s health and not leave the environment to the newspapers and businesses but become involved and knowledgeable about their own environment and about local business and development. ( Maslow’s hierarchy of needs)
     
    Health is not just the absence of disease but it is also the fullest expression of each genome within a healthy environment and on a sustainable planet. Passive consumerism is not the fullest expression of the full potential of the genome active participation represents a fitter expression.
     
    The use of the world “global” reflects the similarity of humans worldwide despite differences in languages and creeds. Uniform systems of numeracy, scientific measurement, botany, geography, accountancy and other abstract disciplines have offered solutions to global problems aided by their description, analysis, study and reproducibility.  Electronic health records describe, analyse, study and reproduce too especially as their architecture and coding become consistent, universal and ubiquitous.
     
    It seems sensible to address electronic health records issues globally as well as the levels of the 195 separate states since there are such rapid and so many global technological advances that are changing the health IT landscape. There will be national solutions as well as international ones and there are reasons to press forward with both together.
     
    Culture changes invoke resistance, mistakes, misfortunes and opportunities. SMS messaging started 20 years ago and has spread around the world. Mobile phones are doing the same. ITC, shared care pathways and shared electronic records have the potential to integrate self and professional care whilst augmenting traditional medicine. Communication technologies allow the care pathways and care records to be shared between patients, families and lay carers.
     
    At a time when some old people are living longer than they want to, some younger children have no access to health care. There are an additional two billion people to share the planet in the next forty years.
     
    What are changing or need to be changed and where do medical records, intelligence, information, data and data processing fit in with these changes? 
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    The NHS is buckling: the scale of the funding challenge is colossal, the service is under unprecedented strain and it is struggling to keep pace with relentlessly rising demand. So says the Commons Health Committee in its recent report into the impact of the 2016 Spending Review on health and social care. Things will only get worse post-Brexit – indeed there is already a ‘financial reset’ in place requiring the NHS to live within its means, including cutting the clinical pay bill.

    Can technology be a big part of the solution to this situation? It might seem unlikely given the hi-tech fiascos of the last two decades, notably the NHS National Programme for IT that aimed to reform the way the NHS in England used information – abandoned after costing a staggering £9.8 billion and described by the Commons Public Accounts Committee as ‘one of the worst and most expensive contracting fiascos in the history of the public sector’. And only months ago, the Health & Social Care Information Centre branded IT projects in the NHS valued at £5 billion to be at ‘high risk of failure’.

    If there is one lesson to be taken from this it’s that expensive top-down schemes are unlikely to succeed. But what about bottom-up initiatives that utilise the vast array of digital health products now available? From low-level gadgets through to traditional telecare/telehealth and on to emerging digital technology including mobile phones, apps and tele-video, the options are expanding rapidly. All of these make possible the maintenance of independence at home for longer, keeping people out of hospital for longer, discharging them from hospital more quickly, and all at less cost. This looks like a significant win-win for individuals, the NHS, and social care.

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    This is precisely the aim of the ‘Test Bed’ programmes in seven localities announced earlier this year by NHS England CEO, Simon Stevens – a move paralleled earlier in Scotland with its Technology Enabled Care Programme. There is good reason to think that building up successful interventions in this way can be highly successful. Reviews and studies suggest that technology-enabled services can indeed improve the quality of life of older people and their carers, reduce social isolation, increase perceived health status and security, and allow carers to balance care and work.

    The NHS and social care can’t afford to get this technological option wrong, but like any complex issue there are huge implementation obstacles to be overcome. The first is to secure (rather than simply assume) commitment from the key participants – staff and users. Front-line staff are too often seen as passive recipients of new technology and are not involved in the development of systems’ architecture or user interfaces. Failure to convince them of the virtue of change can lead to all manner of resistance strategies arising from inadequate understanding, lack of time, challenges to established routines and fears around job security.

    Users too, have to be convinced of the value of using new devices. Technology varies in the ways in which, and the extent to which, it requires engagement and action on the part of users. At one end of the spectrum, a telecare system based upon monitoring and surveillance may require little more than consent to installation of the equipment; at the other it needs active self-monitoring, self-management and engagement with the technology and with professionals. Where an active role for users is envisaged, issues of digital literacy and resistance come to the fore, and localities will need robust strategies to maximise technological familiarity.  A further barrier will often be found at strategic level – hard-pushed managers and policy-makers stumbling from hand-to-mouth will find it hard to invest time and money in a new and still relatively untriedmodus operandi.

    It is clear that making policies and procedures on technology-enabled care work in practice is difficult. This is not unexpected given the multiplicity of stakeholders with different views on what it means, and the relatively early stage of the policy cycle. Currently there are tensions of many kinds – between innovation and tradition, between enthusiasm and digital Luddism, and between policy aspiration and achievement. What can be done to address this? A robust strategy will have three strands:

    • Structure: a stronger central push
    • Knowledge: a stronger evidence push
    • Culture: a stronger behavioural push

    Despite the appointment of a new NHS Digital Director on a high salary, central policy remains weak and underfunded. We need to move beyond a small number of ‘test beds’ and set up a properly resourced strategy along with clear (but realistic) expectations of what will be achieved, in what ways, and over what period of time.

    Monitoring frameworks like the NHS Digital Maturity Index and Local Digital Roadmaps need to be widened and strengthened to cover entire health and care systems – the future lies in joining up telecare and telehealth, not just having a paperless hospital. Making available free devices and apps to help peoplemanage conditions like diabetes and heart disease (as is planned from April 2017 in England) is a useful measure but overall, current policy still resembles a hotchpotch of initiatives rather than a coherent strategy.

    Secondly we need to develop the evidence base to establish whether, and in what ways, technological application can make a difference. Notwithstanding the success of some small-scale initiatives, the evidence base for scaled-up technology enabled support is still thin, especially in the case of telehealth – currently ‘in the foothills of a journey’ according to a comprehensive review by the Nuffield Trust. The last major study in the UK was the ‘whole systems demonstrator’ programme funded by the Department of Health which found mixed results but it should be remembered that this study is ageing and the pace of technological change is quickening.

    Finally, there is the need to face up to the enormity of the digital revolution. The rapid growth of Information and Communication Technologies and innovation in digital systems represent a revolution that has fundamentally changed the way people think, behave, communicate, work and earn their livelihood. There is every reason to think this will apply just as much to the way health and care is delivered in the future, yet it tends to be perceived as an optional bolt-on to ‘normal business’. This won’t do.

    Going ahead we need first of all a stronger organising vision – one that is informative, plausible, important and distinctive and will serve to legitimise and mobilise a new digital paradigm. This, in turn, must be underwritten by a transformation programme. Organisations will need to invest at least as much into programmes of organisational change as in the technology itself. This is precisely the sort of thing that should be integral to the local Sustainability and Transformation funding and planning process designed to implement the Five Year Forward View, but instead it is tending to be used to simply plug provider deficits. Finding the resources for change management, training and embedding new processes is a big challenge for organisations already operating at maximum capacity, and it would be reasonable to look to the Treasury to find ways to fund an ‘invest to save’ programme.

    The prospects for a ‘Digital First’ NHS stand at a policy crossroads. Either we carry on with ad hoc, pump-primed local programmes that may, or may not, add up to more than the sum of their parts, or we take a paradigm-shifting leap. We set out a clear national agenda to be followed by action at local level to achieve what has been described as ‘digital congruence’ – culture, people, structure and tasks all aligned with each other. The challenge is complex and messy; the rewards potentially huge.

    This was first published on the British Politics and Policy blog

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