Can Politicians Save Us?

July, 26, 2021 | 5 Comments


  1. Re Surveillance Capitalism ( UK is one of the most surveilled countries in the world.) There is still a month left for citizens to opt out of sharing all medical data – unless politicians and their networks are forced to extend the period again. Groups of doctors – Kudos to them – and others have carried out a huge campaign in UK to prevent them slipping it in under the radar There is still something missing Our data used for whatever purpose. should be made publicly available This site is intended for health professionals only
    Meanwhile, figures show NHS Digital has recorded over three million national data opt-outs since 1 July 2021, from patients who do not want their confidential information to be used for anything other than their individual care.

    NHS Digital launches data transparency tool as millions opt out of record sharing
    NHS data
    Caitlin Tilley (Pulse Today)

    26 July 2021

    Patients in England can now see which organisations have accessed their NHS data and for what purpose.
    NHS Digital’s new Data Uses Register service intends to increase transparency around how patients’ data is used by third parties.

    It comes as the Government was forced to delay the General Practice Data for Planning and Research (GPDPR) scheme again last week after a backlash over patient data safety.

    Meanwhile, figures show NHS Digital has recorded over three million national data opt-outs since 1 July 2021, from patients who do not want their confidential information to be used for anything other than their individual care.

    People can already see what data the NHS releases, but the new interactive tool allows people to see more clearly which institutions utilise the data, why they are allowed to access it and the anticipated benefits.

    Organisations making use of the data include public sector bodies, charities or commercial organisations, who all legally have access for health and care-related planning and research.

    Previous uses of the data include enhancing existing NHS patient services, creating new ones and assisting NHS organisations innovate new resources to offer better care.

    The data can also help shape new treatments and aid NHS and local authorities with planning services.

    For example, patient data was critical to determine which medications, including dexamethasone, were most successful for Covid patient outcomes in the University of Oxford’s Recovery trial. The drug went on to save more than a million lives worldwide.

    NHS Digital’s interim chief executive Simon Bolton said the new Data Uses Register is ‘an important improvement to make our data sharing agreements more transparent and user-friendly’.

  2. Beware of Everything – pot-shot at Horton

    We have become used to the sight of politicians fighting like ferrets in a bag to ensure it is their rivals, and not they, who take the blame for any blunders in the battle against the coronavirus.

    When, for unexplained reasons, it wouldn’t, he contacted Farrar, who reveals that he both emailed and texted The Lancet’s editor-in-chief, Dr Richard Horton — but got no response.

    It could have shattered the reputation of the entire advanced medical research profession globally. It would have been the scientists, and not the politicians (about whom Farrar is consistently critical in his book), charged with infamy and incompetence.

    That would not have been a good thing, especially as it is British medical researchers, with Farrar’s involvement, who have done so much to improve the treatment of Covid-19.
    But let’s not forget that the medical establishment has its own political prejudices, too: and it certainly seemed to prefer Beijing to the conspiracy theorist then in the White House.

     ‘free flow of critical ideas’ is beyond parody. …

  3. More blah from the MHRA and Yet another independant group has been set up due to the need to protect the public somewhat from the regulators and their chums
    PUBLISHED Yesterday at 08:00

    This week the Department of Health and Social Care released the UK Government’s response to the recommendations of the Independent Medicines and Medical Devices Safety Review, sometimes referred to as the Cumberlege Review. In this blog Patient Safety Learning sets out its reflections on this.

    A year on from the publication of First Do No Harm, the report by the Independent Medicines and Medical Devices Safety (IMMDS) Review, the Government released its full response to the Review’s recommendations.[1] [2] Published alongside this was the report from the independent Patient Reference Group, established to provide advice, challenge and scrutiny to the work developing the Government’s response.[3]

    Medicines and Healthcare products Regulatory Agency
    The IMMDS Review highlighted several patient safety concerns relating to the role of the Medicines and Healthcare products Regulatory Agency (MHRA). It stated that the adverse event reporting and medical device regulation required significant revision and advised that the MHRA needed to ‘ensure that it engages more with patients and their outcomes’.[1]

    The Government’s response fully accepts the Review’s recommendation calling for change at the MHRA. It then proceeds to outline a range of activities now being undertaken by the MHRA to improve its approach to patients, adverse event reporting and strengthening its regulatory approach.

    Discussing the need for reform of the MHRA, the Patient Reference Group in its report noted:
    The MHRA’s approach to patient engagement needs to become meaningful, to avoid being seen as simply a ‘tick box exercise’.[3]

    Our reflections
    We have recently responded to the MHRA directly with our patient safety reflections on one of the activities associated with the Government’s response, their proposed Patient and Public Involvement Strategy.[8] Our Chief Executive Helen Hughes has also provided comments directly to the MHRA as a member of the independent Patient Reference Group on their proposed Delivery Plan for 2021-2023 which is referenced in the Government’s response.[9]

    The MHRA now has a stated ambition to become ‘a Patient focused regulator’.[10] Patient Safety Learning believes that achieving this will require more than just increased patient involvement, it will mean meeting patients’ expectations that healthcare products are safe, and patients are free from avoidable harm. Patient safety is not just about the safety of the product but its “safety in use”. There needs to be greater clarity about MHRA’s role and how it engages with the wider healthcare system to achieve this.

    We also note that there has been a failure to acknowledge or address the serious criticism of the MHRA’s organisational culture in the IMMDS Review. Culture change is about more than staffing, governance, structures, and processes. It is also about leadership, behaviour, and psychological safety. There isn’t yet a clear picture of how the much-needed cultural change will be delivered. The MHRA has recently appointed a new Chief Safety Officer to support its work.[11] While this is a welcome development, there also needs to be explicit commitment to a focus on patient safety by the senior leadership of the MHRA; organisational culture is a Board and Executive leadership responsibility.

    From a 2005 Report =the MHRA relies on company data, presented as a series of detailed assessment reports, in its decision whether or not to licence a drug. Raw data is very rarely analysed.
    “I include the MHRA in my criticisms. When the public petitions committee took evidence from it, we learned that its detailed analysis amounted to three postgraduate students doing a desktop exercise for two weeks at a cost of £20,000 ($26,000),”

    “The agency is not an effective watchdog. It does not take our concerns seriously. We have written to it a number of times and telephoned it, but we get standard copy-and-paste replies. The agency does not listen to us,” Holmes said.

    Why should anybody trust this ……The Medicines and Healthcare products Regulatory Agency (MHRA) has created an Expert Working Group on Optimising Data on Medicines used During Pregnancy to ensure better data collection and analysis.

  4. From Columbia Uni
    Chile and Brazil are in the forefront of not just holding academic debates but thinking and doing something about the dangers of exploiting and damaging citizens inherent in the growing interest in neuroimaging and AI – (Not a squeak being heard of this in UK where neuroimaging research in mental health is well under way- Is there a Science Minister here?) Neuro rights are n fact regardless of new technigues ,being breached every day when drugs are prescribed designed to change brains One day doing things to peoples’ brains will possibly replace drugs – it is especially of interest to units already researching the brains of people diagnosed with ‘shizophrenia’ and in psychology circles ,the children being deemed as ‘inadequately’ parented- always vulnerable groups

    NeuroRights Initiative
    Technocratic Oath: Coming Soon
    The NeuroRights Initiative, in collaboration with its partners, is drafting an ethical framework for entrepreneurs, physicians, and researchers developing Neurotechnology and AI called the Technocratic Oath.
    Much as doctors must follow the Hippocratic oath, those who develop and administer neurotechnology would follow the “technocratic oath” The Five NeuroRights
    The Right to Personal Identity: Boundaries must be developed to prohibit technology from disrupting the sense of self. When Neurotechnology connects individuals with digital networks, it could blur the line between a person’s consciousness and external technological inputs.
    The Right to Free-Will: Individuals should have ultimate control over their own decision making, without unknown manipulation from external neurotechnologies.
    The Right to Mental Privacy: Any data obtained from measuring neural activity (“NeuroData”) should be kept private.Moreover,thesale,commercialtransfer,anduseofneuraldatashouldbe strictly regulated.
    The Right to Equal Access to Mental Augmentation: There should be established guidelines at both international and national levels regulating the development and applications of mental-enhancement neuro-technologies. These guidelines should be based on the principle of justice and guarantee equality of access to all citizens.

    The Right to Protection from Algorithmic Bias: Countermeasures to combat bias should be the norm for machine learning. Algorithm design should include input from user groups to foundationally address bias.

    Science Minister Couve (left), President Piñera (2ndfrom left), Professor Yuste (3rdfrom left) and Senator Giradi (right)
    Science Minister Couve (left), President Piñera (2ndfrom left), Professor Yuste (3rdfrom left) and Senator Giradi (right)

    Constitutional Amendment
    NeuroProtection Bill
    Technocratic Oath
    Public Outreach
    Brain-Computer Interfaces (BCI) Symposium
    Data Handling and Security
    Societal Impact and Regulation
    congreso futuro

    On the Necessity of Ethical Guidelines for Novel Neurotechnologies
    PDF Download

    Rafael Yuste Speech at the 140th Inter-Parliamentary Union Assembly (any one heard of an MP or AM or someone from college of psychs making any squeaks?)

    PDF Download
    Chilean Library of Congress Report on Neurotechnology
    NeuroTechnologies: Connecting Human Brains to Computers and Related Ethical Challenges

    The reason for needing the above

  5. Eight

    Restoring the Primacy of Safety

    Stephen’s Voice – Suicide Prevention


    Great to see Stephen’s Voice raising #PrescribedHarmAwareness. This letter to Ireland’s #health “leaders” is relevant to every country given serious adverse #drug effects and the lack of appropriate action from drug regulators & prescribers is a global problem.

    Current ‘Status’ …

    Looks like the same loss of ‘Crown’ with Paxil/Seroxat – ‘lacked credibility’ – ‘deep expertise’ in pharmaceuticals –

    ‘left in the dust’ …

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