NHS "Data Grab": We hear from the National Pensioners' Convention

The Trades Council meeting this month heard from a National Pensioners Convention member about their concerns regarding the NHS "Data Grab".  The article below comes from the NPC.  You can read more about how you can get involved in the campaign at their website here. 

What’s this NHS Data Grab I’ve heard about? 

Photo 117291219 © One Photo | Dreamstime.com

The government wants to collect the confidential health records of every GP patient in England and put them into one huge new data pool. It says “third parties” will be able to access this pool, including commercial companies, but won’t say who or how. 

•  The scheme’s official name is GPDPR or ‘General Practice Data for Planning and Research.’
•  It will take 55 million people’s cradle-to-grave health records and put them in a central database – to be used by many different parties, for many different purposes. 
•  This is new. Under today’s system, requests for GP data are made on a one-off basis. GPDPR is far bigger and broader. It puts 55m health records in a single place that updates in real time. In the government’s words, it will ‘collect [your data] once, [but] use [it] many times’. 
•  A similar scheme, ‘care.data’, was tried in 2013, only to collapse over widespread concerns over privacy and corporate access. We don’t want to repeat the same mistakes today.

What’s wrong with that – surely the NHS using data better is a good thing? 

It isn’t just the NHS who will access data. You can’t pool the cradle-to-grave health records of all 55 million people in England without telling people and giving them a meaningful say in how the new system works. It’s undemocratic and could damage trust in the NHS. 

•  This huge change wasn’t explained to patients. Matt Hancock told Radio 4 that his aim was for patients to control their own data and “consent should be at the heart of it”. He also said he was “not against” writing to everyone in the country, or sending everyone a text message, like with the COVID vaccination programme, to inform them of the change. 
•  But this is the opposite of what’s happened so far. Instead, the change was posted on one NHS Digital website. How does that reach the millions over-65s who aren’t online, for example? 
•  The government needs to tell us why it wants to build this new data pool - and what it plans to do with the data. It should urgently explain who the “third parties” are who will have access to our data, and what standards they will need to meet. 
•  Matt Hancock needs to explain what alternative models he has considered for managing NHS data research. For example, openSafely, the data platform developed by Ben Goldacre during the pandemic takes research queries to the data itself - instead of grabbing the entire GP record. This might solve some of the problems with maintaining public trust.  

But NHS Digital says that “Data saves lives?” 

No-one is opposed to using health data for research that saves lives. But the data can also be used for profit. The plan must benefit the NHS and, crucially, maintain the faith and trust of patients. 

• Of course, data can save lives. But it can also make people a lot of money – and those goals don’t always support one another. 
• The government should be honest about this. Research shows that, compared to the NHS, people are less comfortable with private companies using their confidential health records to make a profit. 
•  Matt Hancock must set out in plain English on what terms companies could access this massive new pool of our GP data – and give people a choice. 

Isn’t this data anonymous? 

This data is not anonymous. It is pseudonymous. This is a really important distinction and is practically and legally different to anonymous. 

•  Government spokespeople have repeatedly mixed these up. It is pretty easy to identify people from pseudonymised data - often with only a few bits of information about you. 
•  The government says they may re-identify your data in certain circumstances - without fully explaining when they might do this. 
•  As for companies, to identify someone from pseudonymised data is illegal in most cases. But the body who handle those offences, the Information Commissioner’s Office (ICO), is understaffed, underfunded, and unable to enforce against major breaches. 

There must be safeguards in place already to protect this data? 

The safeguards aren’t strong enough yet – there’s one expert body that doesn’t explain its decisions clearly, and the ICO hasn’t got the resources to police the law. And the government may be about to dilute the laws that protect your health data. 

•  A body called IGARD considers requests for data access. The minutes of their meetings are online, as is a record of requests for data. But the records of their meetings aren’t easily understood by the average person – nor are the standards they judge private companies on.
• Watchdog group medConfidential has published a list showing lots of third parties have broken the rules when they used medical data. And the ICO, as we said, just hasn’t got the resources to follow up every time the law is broken. 
•  The government’s also considering weakening legal protections for your health data. 

Is it biased to refer to GPDPR as a “data grab”? 

What would you call taking the personal information of 55 million people – without asking for permission, presenting an informed choice, or, until our case, giving fair warning at all? It doesn’t seem an exaggeration to call that a data grab. 

•  Millions of people still haven’t heard about this system. Originally, NHS Digital set a deadline to opt-out of June 23. We think the new deadline is August 25. If you haven’t opted-out by then your GP data will be gone forever and you can only prevent future data being shared. Does that seem like a reasonable and fair system to you? 
•  Again – where is the public information campaign? Matt Hancock admitted that a “proper national debate” is needed but has done little to create one. We know the government can text the nation, can address the nation daily at teatime on BBC One. Why haven’t they? 
•  It’s not too late. The government could repair damage by slowing down and making a much bigger effort to consult people. Our data is there for the asking, not the taking. 

If giving private companies access to my data helps the NHS, what’s the problem? 

The question we always need to be asking is: who benefits? The collected data of the NHS is the most valuable resource of its kind in the world – but only because it has been created and paid for over decades by taxpayers and ordinary British people. 

•  Companies requesting access to health data tend to promise “innovation”. But there is evidence that using data in this way can make unfairness in healthcare worse, not better. 
•  “Innovative” medicines are often priced too high for the NHS to buy them, so how does that benefit the NHS? What if instead, access to our data meant the NHS got the final product for free or a share of any financial gain? Or the product could be made open source, so everyone can benefit. 
•  Most of all – we need to make sure that introducing a major profit motive in our health service doesn’t undermine the core value of the NHS: a universal service free at the point of delivery, with care of patients at its heart.

Find out more about how you can support the NPC's campaign on this, and other issues, by visiting their website here. 

Why Fuller Must Fall

The toppling of Edward Coulston's statue in Bristol was a visual reminder of the ongoing campaign to tell the real story of Britain's slave trading history, and to tell the truth about those figures who grew rich and influential  (and their descendents to this day)  on the profits of this vile trade. 

Many local people may not know of the role played by our own local slave master...

We're not calling for the follies and monuments to be pulled down, incidentally, but for the real story behind these visible and living pieces of history to be told. 

Eastbourne Trades Council has added its name to this statement from Sussex Stand Up To Racism: 

"John ‘Mad Jack’ Fuller (1757-1834) was the wealthy Squire of Brightling near Battle in East Sussex and Tory MP for Sussex from 1801 to 1812. Fuller still currently enjoys a reputation as an eccentric and philanthropist, and his nickname of ‘Mad Jack’ originates because of a number of follies he constructed around his estate, the most famous being a large pyramid shaped mausoleum which dominates Brightling’s churchyard. (Photo 127559593 © David Dennis | Dreamstime.com) 

 Less well recognised and appreciated about Fuller is that he was a slaveowner and in many ways ‘East Sussex’s Edward Colston’ as a large section of his wealth (and that of the wider Fuller family) came from the profiteering from the barbaric exploitation of forced labour on two plantations in colonial Jamaica, the Knollis estate in St Thomas-in-the-Vale [now St Catherine] and Grange Pen in St Catherine (more information here)

A vociferous anti-abolitionist he used his position as a Tory MP to try and prevent the end of slavery. Fuller belonged to the West India Interest, a powerful lobby group that financed racist pseudo-science to show that enslaved Africans were degenerate and sub-human. When he died in 1834, he left an estate of £160 000 (£20 million in today's terms) which included about 270 enslaved people (more information here) 

While some institutions like the Church of England, National Trust and the Royal Institution have begun to distance themselves from Fuller when informed of his role in colonial slavery, with for example the Royal Institution recently ending their Fullerian Professorship scheme, there are still other institutions and organisations that continue to retain their links to this slaveowner. 

We therefore call upon all such institutions and organisations to fully and unequivocally accept that any scientific, cultural and social advances attributed to Fuller result from money gained from the exploitation of thousands of enslaved Africans, and publicly end their association with Fuller. "

What's Going on in Cuba?

The Eastbourne Trades Council is an affilate of the Cuba Solidarity Campaign, and supports its work in opposing the internationally-condemned US trade bkockade of the island, and seeks to defend the social gains of the revolution in areas such as health and education.    We are also mindful that TUC trade unions, and many of their members have a variety of different views and opinions of areas of policy in Cuba including human rights and freedoms, and the role and operations of independent trade unions.  We welcome comradely discussion on all of these matters.

The Cuba Solidarity Campaign published the statement below on 12th July 2021. 

The Cuba Solidarity Campaign calls on the US government to suspend the blockade of Cuba to allow emergency medical and humanitarian aid into the country in order to ease the economic and health crisis the island is experiencing. 

The current emergency is a result of the ongoing US blockade, an additional 243 sanctions imposed by the Trump administration, and the impact of the COVID-19 pandemic. 

Cuba has shown incredible resilience in the face of six decades of economic warfare by the US government in the form of a blockade intended to strangle the economy and create hunger and hardship in an attempt to destabilise the country. 

The Cuba Solidarity Campaign opposes any calls for foreign intervention coming from those in the US who seek to exploit the current difficulties and provoke unrest. The solution to the challenges Cuba faces must be resolved by the people of Cuba and we support the efforts that the Cuban people and their government are making to fight the pandemic in the face of ongoing sanctions and provocations from the US. 

On Sunday 11 July, some street protests took place against the scarcity of food, medicines and power supplies. The vast majority of these protesters have genuine concerns regarding these shortages. President Miguel Díaz-Canel travelled to San Antonio de los Baños, site of the original demonstration, and spoke to people about their grievances. 

Some groups are seeking to exploit and provoke this difficult situation. They called for people to protest in other locations, resulting in protests in some towns and cities. In response, thousands of Cubans supporting the government have taken to the streets across the island in counter-demonstrations against US interference. 

Now right-wing, pro-blockade, and regime-change politicians and groups in the US are also seeking to manipulate the situation. They have called for a so-called “humanitarian corridor” (a pretext for US intervention) to be set up. Anyone genuinely interested in helping the Cuban people at this time should instead be calling for the US government to ease the crippling sanctions. 

The calls for US aid delivered through a US-imposed “humanitarian corridor” are disingenuous and fraudulent. These are the same people who hypocritically call for humanitarian intervention while supporting blockade policies which have caused shortages of food, fuel and medicines. 

CSC condemns those in the US and internationally who are cynically using the situation to destabilise Cuba, and supports Cuba’s right to self-determination. 

The Cuba Solidarity Campaign appeals to the Biden administration to observe the recent United Nations General Assembly vote on 23 June 2021 which voted 184-2 for an end to the blockade of Cuba. It is immoral and dangerous to seek to exploit the current struggles of the Cuban people to serve the political objectives of a few hardliners in Miami. 

Genuine efforts to support the Cuban people are welcome. Individuals and organisations can directly help by becoming members of CSC Donations can also be made to CSC’s COVID-19 Medical Appeal. 

Background information 

In recent days Cuba has experienced its worst increase in COVID-19 cases since the beginning of the pandemic, with a severe outbreak in the Matanzas which has stretched capacity in hospitals and isolation centres to the limit. Five hundred medics from other parts of the country have been deployed in the province to help. It is important to note that while the situation is severe, the numbers of cases and deaths are far below those in most other countries of the region including the United States itself which as of 10 July had a death rate of 1,870 per million compared to Cuba’s 139 per million. 

At the same time Cuba is in the midst of its most severe economic crisis for more thirty years. The sixty year-old US blockade was tightened by the Trump administration by imposing 243 extra sanctions – all of which remain in place. These measures had already resulted in grave food, medical and fuel shortages before the pandemic struck. In addition, increasing numbers of banks are refusing to transfer funds to Cuba for fear of US fines, and it is now almost impossible for Cubans living abroad to transfer money to family on the island. With the onset of COVID-19, Cuba has also lost vital income from international tourism, which was down 94 per cent in the first four months of 2021. 

Fuel shortages are causing many power cuts, which in the height of summer mean that air conditioning and fridges don’t work. There are long queues for food, medicines and basic goods. Without doubt the Cuban people are experiencing incredible hardship. People with friends or family in Cuba will have heard how difficult things are. 

Last year the US blockade even prevented delivery of a consignment of COVID-19 medical aid for Cuba, including PPE, ventilators and testing equipment. Despite having two home-grown vaccines, Cuba’s vaccination roll-out programme is hindered by a lack of syringes and raw materials as a direct result of the blockade. Solidarity organisations around the world have had funding sites raising money for COVID-19 medical aid closed down because of blockade measures. CSC itself receives numerous enquiries from people who can’t find a way to transfer money to friends and family in Cuba. Meanwhile, the US government spends millions of dollars every year on so-called “democracy promotion” on the island, funding groups and individuals who work undercover attempting to build US-supported opposition. 

If those calling for humanitarian aid to Cuba were genuine in their intentions they would start with calling for the blockade to be lifted to allow medical and other supplies to be sent to Cuba. However their true objectives are those of the blockade itself. As the infamous US State Department memorandum on the blockade of 1960 laid out: 

“The only foreseeable means of alienating internal support is through disenchantment and disaffection based on economic dissatisfaction and hardship… every possible means should be undertaken promptly to weaken the economic life of Cuba… a line of action which, while as adroit and inconspicuous as possible, makes the greatest inroads in denying money and supplies to Cuba, to decrease monetary and real wages, to bring about hunger, desperation and overthrow of government.”

You can donate to the Cuba Solidarity Campaign's Medical Aid to Cuba campaign by clicking here.  

We Stand with our Three Lions!

 

Tonight's meeting of Eastbourne Trades Council sent a message of solidarity via the PFA to Bukayo Saka, Marcus Rashford and Jadon Sancho; and all their colleagues who are standing against the vile racism they have been subjected to this week.

We stand with our Three Lions!

The PFA today said: 

"Over the past few weeks, our England team have demonstrated courage and class, on and off the pitch.  

They have been principled and dignified, and their determination to succeed and their performance got us to the final. Most importantly though, they have shown us what the best of England can be.

If you watch a football match, see players - who have stepped up to try and win the match for their country - miss a penalty, and you feel compelled to go on social media and racially abuse those players, you represent the worst of us.

When you abuse any of our players, you abuse all of us.

Racist abuse causes trauma. It will impact the targeted players, their teammates, and we know it will also affect their peers. It causes hurt to all the other fans who view online hate, and it will inevitably live with the next aspiring generation of young players. 

Unfortunately, the abusive messages were all too predictable. However, the intervention from social media companies is insufficient, and it is allowing racist abuse to thrive on the platforms.

Social platforms must permanently ban all offending accounts and proactively compile evidence to give to the police to pursue prosecution.

We have collectively called out unsatisfactory policies and action around racist abuse for years – and still, it continues. 

There has been talk of strong commitments and tough measures from the social networks. Based on the evidence so far, we’re not buying it. 

Social networks, we need you to do better."      (Source: The PFA)

Next Trades Council Meeting: Tuesday July 13th

The next meeting of the Eastbourne Trades Council will be at 7.30pm, on Tuesday 13th July 2021, via Zoom.  All Eastbourne trade unionists are welcome to attend. 

Please register in advance by clicking here

A G E N D A 

1. Introductions and apologies for absence

2. Approval of any new affiliations.

3. Minutes of previous meeting and matters arising.

4. Treasurer's Report

5. Campaign Updates from local Union branches and from online Trades Council Conference

6. Other Campaigning activity:

     (a)  The Future is Female- demonstration 24th July

     (b)  Eastbourne Stand Up to Racism- update

     (c)  Other Summer campaigning, post-lockdown

7. Any other business