EU backs Open Science policy, while UK considers censoring scientists

The EU has agreed all publicly funded science within the EU should be available free of charge. This momentous decision supports the Open Science concept, which promises to increase access to research data and enhance its use.

This enlightened leap by the EU is in stark contrast to the UK government’s recent moves that, with an astonishingly cynical backdrop,  could prevent publicly funded academics from ensuring their work benefits the public via evidence based policies.

The EU Competitiveness Council announced after its meeting in Brussels that all scientific papers funded fully or partly by public money will be made free to access by 2020. This occurs under the Netherlands presidency of the EU, who have been strong proponents of Open Science. Chair of the council Sander Dekker, who is also a cabinet minister in the Netherlands, said …….

Read the rest at The Canary

Information and tools to change the world in 2016

Knowledge is power, so they say. The information technology revolution we are living through offers the possibility of significantly increasing our knowledge; which if used effectively/collectively can empower us to change the world. I am assuming anyone reading this will want to change the world for the better, if not I suggest you stop reading this now.

Governments across the world are firm believers in the well worn maxim7851166090_fe20caa69a_o knowledge is power, which is why they generally try to maximise the amount of information they have on you while limiting the amount of information you have on them. Our current government is an excellent example of this type of behaviour, currently they are pushing through an Investigatory Powers Bill (but don’t worry they promise only to use it against paedophiles and terrorists) while simultaneously trying to nobble the Freedom of Information Act (while insisting they are promoting transparency).

Below are a list of websites that enable you to gather relevant information and offer suggestions on how to use it. Maybe after reading this article you could use your powers to oppose the governments nefarious plans, but that is completely up to you. All I ask is that you use any new knowledge you aquire wisely.

They Work For You

They Work For youWhat does your MP do all day? Does he actually turn up to parliament and vote, or does he spend most of his time being wined, dined and schmoozed by powerful lobbyists? They Work For You is an excellent tool which provides an easy way to find out, just stick in your postcode and you can find out what your MP has been up to lately. You can also search parliament records for subjects, keywords and phrases that have appeared in debates. If you register you can get email alerts every time your MP speaks or an issue you are following is brought up in parliament.

Local Authority Public Records

If you want information at a more local scale your local authority holds a wealth of information relevant to you and your community. Manchester City Council’s website has a comprehensive ‘The Council & Democracy‘ section to promote public and press scrutiny of the local democratic process. It includes information on:

  • MCCrecords
  • Links to live and recorded webcasts of meetings.
  • Meeting Meeting minutes and agendas
  • Information on councillors in the borough
  • Statistics,census and budgets
  • Policies, strategies and future plans

These sites are generally not very well designed and the included search tool not very useful. On my more cynical days it crosses my mind that maybe this is done on purpose to make it harder to find relevant information. If you are struggling to find what you want I suggest using Google Advanced Search, which allows you to search the whole of Manchester City Councils website by inputting the council’s URL (i.e. into the ‘site or domain’ box.

What Do They Know

An excellent site that allows the public easy use of the Freedom of Information Act 2000Freedom_of_Information_logo . This beautiful piece of legislation was brought in by the last Labour government and in my opinion was their finest moment. It enshrines in law public access to information held by public authorities, some information the authorities have to publish, some you have to ask for.

What Do They Know provides an extremely useful tool to ask those questions to the relevant authorities. The relevant authorities (particularly central government) may writhe, wriggle, squirm and try every possible tactic to delay/not publish data that is embarrassing to them. So it is important to ask the right sort of questions, which the site offers advice on as well as providing information on successful and unsuccessful requests by others; they also describe what actions to take if the authorities will not release the requested information.

Full Fact

fullfactAn excellent independent charity (website developed by mySociety) that helps you separate the wheat from the chaff and the bullets from the bullshit when it comes to the claims made by politicians and the media. The site can also help translate the doublespeak spin which the majority of politicians try to bamboozle us with these days. Full Fact describe themselves as non-partisan which gets a big tick in my book, because as Skunk Ananasie sings “everything’s political!

38 Degrees: people, power, change

When you have gathered and analysed your information you may have identified something that you would like to change, and are prepared to stick your neck out and campaign to change it. This is an excellent time to visit the 38 Degrees website which has an excellent Top Tips section on running a successful campaign, including short videos giving advice on:

  • Writing a petition, the site contains an excellent e petition tool
  • How to use social media, such as Facebook and Twitter.
  • How to write emails promoting and supporting your campaign.
  • Running events to boost campaigns.
  • Involving the media in your campaign.

BBC Academy

BBCacademyI love the BBC, which maybe explains why the current Tory government killjoys are trying to diminish its capabilities and turn it into just another substandard, heavily biased, advertisement riddled private broadcasting company. Amongst the many magnificent offerings on its website is the BBC Academy which has an excellent journalism skills section. Two particularly useful sections with relevant information on creating online content to support campaigns are Social Media and Content Production.

UK Parliament Website


The UK Parliament Website provides everything you need to know about the workings of the mother of all parliaments in both the House of Commons and the House of Lords. You can also submit evidence to upcoming Select Committee’s and Joint Comittee’s through this site.

Office for National Statistics


Another treasure trove of information which the government don’t mind to much about being made public. The Office for National Statistics (ONS) is the largest independent producer of official statistics in the UK and is the recognised as its national statistical institute. But beware, there can be a certain amount of spin in how they analyse and present the data. If you cant find it here you need to make a freedom of information request.

So there you have it, for what its worth. I hope there has been something of use to you in this article to aid your quest for a better world in 2016. If you have any sites that would make a good addition to this list please suggest them in a comment below. I will take this opportunity to wish you every success in your activities this year and – may the force be with you!


Article first published in 38 Degrees Manchester, 6th January 2016

Gerald Kaufman and Gorton councillor condemn Devo Manc

From left: Emma Runswick (Save Our NHS), Caroline Martin (Gorton Against Poverty) and Sir Gerald Kaufman (MP for Manchester Gorton)

From left: Emma Runswick (Save Our NHS), Caroline Martin (Gorton Against Poverty) and Sir Gerald Kaufman (MP for Manchester Gorton)

Gerald Kaufman denounces the Devo Manc deal at public meeting in Levenshulme. Gorton South Councillor Julie Reid warns of “privitisation by the back door” and warns of possible mergers between Greater Manchester Colleges.

At a public meeting in Levenshulme Gerald Kaufman, Labour MP for Gorton, heavily criticised the way the Devolution Manchester (Devo Manc) deal had been forced on the people of Manchester, and warned of its potential adverse effects once the deal begins to bite. Julie Reid, Labour councillor for Gorton South, spoke at the meeting warning of upcoming government reviews of Greater Manchester (GM) Colleges followed by other GM tertiary education establishments. Reid warned that the non-Ofsted reviewers would be considering possibilities for mergers between these institutions.

The people at the meeting, held last Friday evening at the Inspire centre, were informed by Kaufman of the severe deficiencies of the Devo Manc deal and its lack of accountability, preventing those deficiencies being addressed.

Kaufman was particularly concerned with effects on the NHS saying “the national health service is the most important service we have in this country, its vital and everybody needs it from time to time and some people a lot of the time. It is under attack from this government right now’. He went on to say “we don’t know what the hell the structure [of the NHS] is going to be under devolution. What we also don’t know is how the money is going to be allocated and who will do it.”

An undergraduate student of medicine in Manchester, and member of the Save our NHS campaign, Emma Runswick agreed with Kaufman’s criticisms, and was concerned about the cost of increasing privatisation to the NHS. “Operating in the market, is costing us £9 billion a year, that is £9 billion that we are not spending on patients”. Runswick described how PFI debts were costing the NHS £2 billion per year, and that who was responsible for those debts is not made clear in the Devo Manc deal.

After Kaufman’s speech Reid laid into the Devo Manc deal with a passion. “it’s privatisation by the backdoor, breaking the NHS down, breaking higher education down. I am telling you, I am going to be there fighting… if we don’t stop this in the NW, then they will take it round the rest of the country. If we don’t stop them nobody will!”

The shocking news of possible mergers between GM higher education establishments was also revealed to the meeting by Reid, who told of reviews being carried out on Manchester and Bolton colleges this week. “Then they are going to work their way through the whole of GMs college system. This is not Ofsted, these are reviewers from the government, they are going to review provision in GM and guess what? They are going to look at mergers”.

Kaufman also highlighted the inadequacies of the £300 million housing fund, and that the Greater Manchester Fire Service would be abolished and its functions transferred to the mayor. More details of Kaufman’s damning Devo Manc speech can be viewed in the video below.

Organiser of the meeting Evan Pritchard (Greater Manchester Unite Community Branch) was happy with the ground covered by the meeting. “The meeting brought out the reality that these changes are about a linked attack on democracy and on the living standards and working conditions of the majority through the furtherance of austerity and privatisation.” He went on to say “hopefully people attending the meeting will be using what they learned to educate their friends, neighbours and workmates as to what is being done behind our backs to change fundamentally the way that public services will be run locally.”

Pritchard was encouraged by the fact that locally elected representatives of the Labour party had took a stand against Devo Manc during the meeting. “These representatives should be applauded for the stance they are taking, and encouragement should be given and pressure placed on other councillors and MPs in Manchester and in the wider area of Greater Manchester to take the same position.” He was hopeful that this meeting would act as a catalyst for a growing opposition to Devo Manc.

Originally published in Manchester Mule

Conrad Bower

For more information see: Greater Manchester Referendum Campaign and Save Our NHS Greater Manchester Coalition

AllTrials – The story of AllTrials


Almost half of all the clinical trials ever conducted have never been reported.
This is the story of the campaign to find them—and to fix medicine.

“I felt like I was a mouthpiece for this giant army of disenfranchised nerds,” said Ben Goldacre. It is a bright spring day in Oxford—a city of concentrated architectural stimulation—and we, along with Síle Lane, campaigns director for Sense About Science, are ensconced in a bland office at the very studious Center for Evidence Based Medicine, where Goldacre is a Senior Clinical Research Fellow.

The story of AllTrials really begins with blogging, which Goldacre started to do as a young doctor in 2003. “Bad Science” was an attempt to explain how science and statistics really work and how “quacks, drug companies, politicians, and dodgy journalists” repeatedly get science and statistics wrong, he said. And it hit a nerve: “On the one hand, mainstream media produced stuff that was clearly wrong, and on the other hand, mainstream media dumbed down and didn’t produce stuff that was stimulating and interesting and correct,” he says. His blog gained a following, and caught the interest of the Guardian newspaper, which gave him a column.

via AllTrials – The story of AllTrials.


Punk journalism: can it challenge the mainstream media?


Punk rock exploded into life in the 70s, firing the passions of a generation who were tired of jaded, distant and ostentatious mainstream rock groups. Punks emerged in local scenes all over the UK; the stripped-down instrumentation and simple style encouraged emergent punks to start up their own bands, in some cases self-producing their work and distributing it through alternative networks. The DIY principle was strong in punk, lyrics reflecting personal experiences and disillusionment with society, generally avoiding the love song mainstay of the mainstream. This resulted in a strong political streak to punk music, often rebellious and anti-establishment.

There is a new breed of journalism developing that shares much with the punk ethos. It is a journalism that has grown tired of the jaded and biased views of a mainstream media dominated by monopolies. It is a journalism emerging from local community DIY initiatives, in response to the barren local news landscape, occasionally crossed by the lightweight, directionless tumbleweed offerings of a mainstream press dedicated to serving itself, the affluent and the powerful rather than society as a whole. It is a journalism created by people passionate about bringing to light the important social justice and public accountability issues deemed unprofitable, unworthy or uncomfortable by the mainstream. It is punk journalism.

The Salford Star was born in 2005; its editor and founding member is Stephen Kingston, who has fond memories of being a punk back in the 70s. The Star burst into existence in response to Salford residents in Whit Lane being threatened with the demolition of their houses as part of a regeneration plan. “They were fighting like mad, I knew one of the people involved in that from other work, and he said what we need is to give people a voice.” Kingston was at the time working with a local paper called the Old Trafford News, which he decided to leave. “I said OK, we will do one for Salford. Trafford is about one square mile whereas Salford is a big city. So you need a big monster magazine for a big monster city, that was how it was born.”

Salford Star issue one

Kingston spent six months researching, talking to the community, holding public meetings to determine what the people of Salford wanted from a local paper. He also investigated the strong Chartist movement’s ties with Salford; there was a huge national meeting to promote social justice on Kersal Moor in 1838. The Chartist paper was called the Northern Star, hence one reason for naming the Salford Star, the other reason being that it had a tabloid ring to it that made it more accessible. It was a source of pride for Kingston that the paper had grown from the needs of the community and that the community members who helped found the paper were still on the board of directors.

Basically it inspired people like myself from that generation to say fuck ’em, we will do it ourselves.

Punk brought about significant change according to Kingston: “In terms of giving people self-confidence to do it themselves, it was the most influential movement probably ever. Because the people who got involved in punk suddenly got a sense that, yes they can take on authority.” He went on to describe how punks reacted to music, art and fashion they didn’t like by creating their own: “Basically that inspired people like myself from that generation to say fuck ’em, we will do it ourselves.”

The decline in local journalism in the UK has been rapid, with many commentators acknowledging that there is a deficit in the ability of the local press to hold people in power accountable. This decline is mainly attributed to the rise in online media sources, which has led to a drop in sales of local newspapers resulting in loss of revenues from the cover price and advertising. A report released last year by the Media Standards Trust summarised this decline in the UK:

  • Revenues of the four primary local newspaper companies in the UK, between 2005 and 2010, dropped by between 23% and 53%.
  • Media Wales staff fell from around 700 in 1999 to 136 in 2010.
  • Northcliffe Media employees fell from 4,200 to 2,200 between 2008 and 2012.
  • Media analyst Claire Enders calculated that 40% of jobs have gone in the course of five years in the UK regional press.
  • Between 2005 and 2012, a total of 242 local newspapers closed.
  • The total circulation of local/regional daily papers dropped from around 4.5m to around 2m between 2000 and 2013.

Co-founder of the Bristol Cable, Alon Aviram, is worried by the current state of the traditional press in the UK. Aviram spoke of his concerns over media conglomerates dominating the remaining local news scene and shaping the nature of the content (Lord Rothermere and Trinity Mirror are two major stakeholders in Bristol’s traditional local paper, The Bristol Post) and the media deserts caused by media consolidation and local papers closing down, “especially low-income communities where papers don’t necessarily operate because advertisers are not interested in reaching out to those communities. So there is a major issue where local media especially is just pretty boring and doesn’t fulfil its function of scrutinising the activities of those in power.”

Overturning old models

The Bristol Cable was established in 2013 by Aviram and Adam Cantwell-Corn with the idea of producing a good quality, sustainable, cooperatively produced media that could go beyond a niche market and appeal to a wide range of people. Aviram is also keen to overturn the old model of one-way direction of news from the media to the public. “We were interested in finding a way to have conversations and investigate established power, whether it was in the home or council or big business… in a way that was shaped differently from traditional organisations.”

The Bristol Cable’s name is symbolic of the philosophy underpinning the organisation: the strands of a cable making up a stronger entity as a whole, the circular cable logo symbolises an exchange of information that can go both ways and sustain itself. The cable also recalls Bristol’s industrial past.

The Manchester Mule was launched in 2008, its logo a bucking mule promising “news with a kick” and harking back to Manchester’s industrial heritage and its use of spinning mules. Its stated three core principles are to:

  • Provide an alternative to traditional local media
  • Use media as a tool for social change
  • Promote openness and inclusivity

As with many punk journalism titles, it has struggled to retain writers, with many contributors moving on to permanent paid positions and input to the online site becoming sporadic. The Mule recently provided a comprehensive local journalism course to encourage local writers to participate. One of the people to complete the course was Ben Beach, a history student at Manchester University planning on a career in journalism once he graduates. Beach thinks the Mule should “look at the Salford Star as something to aspire to … and report on stories, such as the homeless protest camps, that the Manchester Evening News [owned by Trinity Mirror] doesn’t really cover in any depth.”


The Sex Pistols gig at the Manchester Free Trade Hall in 1976 had a huge influence on Manchester according to Beach. He credits the gig with being the catalyst for some of his favourite bands, including Joy Division and New Order. Beach, who will soon be starting the third year of his degree, wants the Mule to offer an alternative viewpoint to the mainstream press and also spoke of the practical reasons for joining the Mule: “Getting work experience and internships is really difficult. While there are student newspapers and publications you can work on, the Mule offers a lot more scope. It covers all of Manchester and not just the student bubble, and it opens up opportunities.”

To become sustainable punk journalism organisations need to become not just a stepping stone to other opportunities, but a worthwhile destination in their own right. But who can afford to work for free (or very little) for any length of time? Very few people, and definitely not students who have likely built up a large student debt during their studies. How can punk journalism become sustainable?

At the Salford Star Kingston has struggled to keep the paper afloat and after 10 years he still doesn’t class it as a sustainable business. “We get loads and loads of donations, very small donations. We have sold 10 T-shirts this week, sold a mug to America, you know we make pounds on them. Advertising on the website, well everyone knows about that, you don’t get it, you get bits and pieces.” The problem with advertising in Salford, Kingston explained, is that the idea of a lot of independent shops has gone and the only businesses that can afford rent in places like MediaCityUK are “big multinationals”, which will not advertise in the Salford Star. He explained that other paid projects are undertaken, such as trade union magazines and teaching, to help keep the Star going.

We wouldn’t accept it [council funding] either because, even though we are going through tough times, we recognise that we need to remain independent.

Holding the powerful to account is also more likely to make you more powerful enemies than friends, which can affect advertising revenue. “Advertising for the actual printed magazine is very difficult, because people are scared of the council,” Kingston explains, saying any companies having contracts with the council, such as regeneration companies, will not advertise in the Salford Star in fear that their association with it would scupper any future deals with the council.

Bristol Cable has also made its fair share of enemies and is unlikely to get any funding from Bristol City Council because of its reporting on their activities. Aviram accepts this bad blood between the Cable and the council as inevitable: “We wouldn’t accept it [council funding] either because, even though we are going through tough times, we recognise that we need to remain independent.”

The Cable has so far been funded by grants, awards and a crowdfunding campaign that raised £3,300 and enabled it to put on 35 hours of free workshops across the city. Three hundred people attended events across the city in things like low-budget film-making, writing and using social media. The Cable also has a membership scheme costing as little as £1 a month; it has already gained over 400 members in the eight months the scheme has been running, who are on average paying £3 per month.

bristol cable

Aviram has high hopes for the membership scheme, hoping it can provide community members with a stake in the Cable and enable work on the paper being paid for rather than voluntary. “Our objective is to hopefully get thousands of people in the city to be members of the Bristol Cable, for a little as £1 a month, and in turn they can self-sustain the Bristol Cable – influence what sort of content they want to see in the paper, have a democratic say on key decisions and be more directly involved in the media as opposed to being just passive consumers of it.”

Michael Moore’s report Addressing the democratic deficit in local news through positive plurality’ compares the state of local media in the UK and US, and suggests the UK should adopt strategies used in the US to support local news. Contestable funding is brought forward as a way of funding local journalism titles and still allows them to maintain their independence, integrity and innovations. He makes three suggestions on how this funding pot can be achieved:

  • Google and/or other large internet companies to supply a one-off contribution. This has already been achieved in France, with Google giving €60m. Google has indicated it is willing to do a similar deal in the UK.
  • Companies collecting and using personal data for commercial benefit to pay an annual charge. Companies are currently doing this, but it is negligible in relation to the profits made.
  • A scheme where every adult in the UK would receive vouchers each year. These vouchers could then be donated to one or many non-profit news services, which can then redeem them for money. It would be funded by a combination of donations from digital intermediaries such as Google.

These excellent suggestions for funding local media need political pressure applying to bring them into play. The current government, while often stating the benefits of transparency, tends in its legislation to make things more opaque. It is possible that it sees a strong and independent local press as a threat to business, rather than a pillar of local democracy. if that is the case, these initiatives are going to need a serious amount of people-power to put them in place.

A flickering flame

Kingston said there were many stories in the Star that he was proud of. One in particular that stood out for him was the series of articles, relying on investigative journalism, the Star had done covering the regeneration of Salford., “They [Salford City Council]were saying, ‘oh, you’re going to get a new house, it’s going to be all lovely’. We knew exactly what they were doing. They were trying to socially cleanse the community. The community knew it, and we gave them a voice.”

At the Cable Aviram also listed reports relying on investigative journalism as the work he was most proud of. One of these reports was an investigation into pay conditions in the catering sector. The Cable carried out a research survey of more than 100 catering workers, resulting in a report presenting unique evidence of poor working conditions and large amounts of unpaid hours. The story got some national coverage with Aviram appearing on BBC Radio 4’s Today programme and You and Yours.

The punk journalism analogy is not perfect; very few analogies are. The punk movement of the 70s was an explosion that burned brightly, profoundly influencing people and society, but all too quickly died down to a burning ember, eventually being subsumed as just another current of mainstream music. The new journalism is more of a slow burn, an ember that needs coaxing into a conflagration, the flickering flame being kept alight by people’s passion for truth and justice. Punk was good at pointing out the inequities of society, but not strong on solutions to those problems. The new DIY journalism offers the opportunity of again effectively holding power to account and providing a platform for democratic debate, promoting the transition to a fairer society.

It is ironic that the revolution in information technology, which is proving so problematic to the traditional press, is providing the tools needed to ignite a burgeoning number of punk journalism titles. These flickering flames can only sporadically cast light into the dark reaches where power is abused. We must feed these flames with the oxygen of reliable funding to produce a blazing local media that can illuminate the abuse of power wherever it occurs.

First Published in the September 2015 edition of Contributoria.

Conrad Bower

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AllTrials victory in judicial review

The AllTrials campaign, mainly funded through charitable contributions, faced the possibility of a serious setback to their work when they faced up to a legal team funded by the war coffers of Richmond Pharmacology. Richmond Pharmacology (RP) had took it upon themselves to oppose the Health Research Authority (HRA) regulations that required all phase 1 clinical trials to be registered. The judges decision, announced on the 28th of July, that the HRA has a clear legal right to monitor researchers’ compliance with legal and ethical obligations to register clinical trials, and a remit to impose sanctions on researchers who breach those obligations.

Ben Goldacre, author of Bad Pharma and co founder of AllTrials said of the case “It is ridiculous that it has taken 5 months of intense legal argument and cost probably hundreds of thousands of pounds, to get this statement of the status quo.”

 What are the the solecisms of the Health Research Authority that you impeach them with

Prior to the case being heard the legal arguments of RP had changed on a number off occasions, as reported here. The case was heard in Manchester County Court on the 16th of July by The Hon. Mr Justice Jay. The arguments put forward by the counsel for Richmond Pharmacology in support of their judicial review were:

  • Reduction in UK phase one trials due to increased regulation
  • Confusing wording, lack of transparency, on HRA website page for sponsor declarations
  • Publishing of commercially sensitive data would be disadvantageous to pharma companies
  • The HRAs documents only set out good practice and not an absolute requirement for pharma companies and their sponsors to register; as their were no sanctions open to the HRA for non compliance

The presiding Hon. Mr Justice Jay was elevated to his position as a high court judge after acting as counsel for the Leveson enquiry. He dismissed the figures presented on the decline of phase one UK trials being due to regulation saying that it was as likely that “cheaper trials in India” was the cause. The judge appeared vexed by the primarily semantic driven arguments of “the lack of transparency” of the HRA web pages saying “What are the the solecisms of the Health Research Authority that you impeach them with”. The Judge also asked the counsel of RP “are you the only one complaining about this” to which the counsel replied by saying a Dr Ulrika Lorch (Medical Director at RP) had been elected on a body to debate phase one trials.

During the break for Lunch I spoke to Catherine a supporter of AllTrials who had travelled from Sheffield to attend the judicial review, she attended the trial ‘Because my son has been severely affected by the no disclosure of side effects in trials.” Catherine’s son had been taking an SSRI antidepressant, when his dose was doubled “He went completely physcotic, absolutely manic. He was taken in and diagnosed with schizophrenia.” Catherine’s hopes for the case were “That the HRA get what they want. That the phase ones are included [registered] so people don’t end up in a mess like my son.”

The Sense About Science team, representing AllTrials, became aware, during the break of an online report from the Ethical Medicines Clinical Group , which was critical of the judicial review instigated by RP. The report said “The judicial review brought by Richmond Pharmacology against the Health Research Authority – erroneous, a waste of public money and if left unchallenged by the biopharmaceutical industry, hugely damaging to it.”

I would hope that the ethical responsibility is seen as a legal responsibility

The counsel representing AllTrials was praised for his work for the trial by the judge saying “the defence has put up a powerful argument”. The main points of the defence argument were:

  • The HRA being subject to the Care Act 2014 and therefore having a duty to protect participants of research and promote safe and ethical working.
  • Duties of the HRA under the World Health Organisations Declaration of Helsinki.
  • HRA having a specific statutory duty to promote safety, ethicacy and transparency.
  • HRA made changes to web pages for sponsor declarations to make them clearer.

The Hon. Mr Justice Jay reserved his judgement on the case till the following week. Alice Fraser, who is about to embark on science degree at Manchester University, was present at the case as a supporter of AllTrials. Fraser had found the semantics heavy arguments of RP disappointing and was concerned about the ethics in the case “there was some dispute about ethical and legal responsibility and I would hope that the ethical responsibility is seen as a legal responsibility.”

Tracey Brown is a Director of Sense About Science, and a founding member of the AllTrials campaign, she was optimistic about the judgement to be made on the case “ The judge showed amazing insight into the issues and in challenging the version of events that was put forward… What became clear today is that there is a very strong ethical obligation, and the judge could not understand, and directly asked Richmond in fact, why you have a problem complying with the ethical obligations”. She was critical of RPs argument that increased regulation was responsible for the drop in clinical trials registered in the UK “because of the fact that the decline started well before any of the regulations mentioned.”

Organisations Supporting AllTrials

Organisations Supporting AllTrials

Brown went on to describe the long hard struggle for transparency by the AllTrials campaign “ Of all the challenges and barriers we have faced getting regulators involved, getting the other pharmaceutical companies engaged, of all the challenges this was the last thing we expected to happen. Because this concerns such fundamental ethical considerations”. She described her concerns when the judicial review was initiated “we realised that people could have thought ‘well that’s a strange little argument between one company and a regulator’, without realising that the potential for it, without any intervention to clarify what this is actually about; without that it could have ended up reversing not just what is going on in the UK, but could become something that would influence people world wide”. A summary of the case by Sense About Science can be found here.

The judgement of Mr Justice Jay mainly found for the defence saying that there were ethical and legal obligations for the HRA to register phase one trials, and that they could impose sanctions on anyone who did not comply. Ironically the judge accepted the claimants submissions that the relevant HRA website pages ‘failed the transparency test’, and these will probably need to be clarified once the Judge issues his order on the case.

Goldacre was disappointed that RP had ever pursued this case, but was happy with the judges decision “Today the judge did a very good service to every UK company working on clinical trials. They should celebrate and capitalise on this success, by telling the world that trials run in this jurisdiction produce reliable evidence, to the highest standards.”

Conrad Bower

Richmond Pharmacology instigates judicial review to suppress transparency in clinical trials


Organisations Supporting AllTrials

The long hard fight for more openness in drug trials is being threatened by a company called Richmond Pharmacology, which is opposing the Health Research Authorities plan to register all clinical trials. Richmond Pharmacology are challenging the HRAs plans for greater transparency in clinical trials by instigating a judicial review of the HRAs proposals to prevent them coming into force.

Sense About Science is a small charity, and a founding member of the AllTrials campaign, that is determined to prevent Richmond Pharmacology from derailing the plans for increased transparency in clinical trials. They have taken the risky step of committing their lawyers to intervene in the judicial review, this could result in financial catastrophe for the charity if their case is unsuccessful.

We know that withholding the results of clinical trials costs lives, wastes money, inflicts avoidable suffering and harm on patients

The  AllTrials campaign was started in 2013 and its stated aim is for ‘all past and present clinical trials to be registered and their full methods and summary results reported’. It is a global initiative formed by a coalition of members; in the UK these members include: Sense About Science, Ben Goldacre (of Bad Science), British Medical Journal and the Cochrane Collaboration. The author of ‘Bad Science’ Ben Goldacre is passionate about promoting good science and is an active campaigner for AllTrials. He has recently appeared in a promotional video called ‘AllTrials: Make clinical trials count’ in which he says ‘We know that withholding the results of clinical trials costs lives, wastes money, inflicts avoidable suffering and harm on patients. And so I don’t think it is any longer tenable to say we didn’t know’.

A well documented example of the harms that can occur when clinical trials are not published is Seroxat; a selective serotonin reuptake inhibitor(SSRI) anti-depressant developed by GlaxoSmithKline and first marketed in 1992. In 2003 it was revealed that it was responsible for a higher risk of suicide in adolescents taking Seroxat (a.k.a. paroxetine) for depression. It turned out that GlaxoSmithKline knew this risk and had suppressed clinical data that proved it. There was also evidence of deliberate, suppression of unfavorable Seroxat research results, a GSK internal document stated “It would be commercially unacceptable to include a statement that efficacy [in children] had not been demonstrated, as this would undermine the profile of paroxetine”. In 2012 GSK were ordered to pay $3 billion dollars by the US Justice Department for their part in suppressing data on the increase in suicide risk in juveniles on Seroxat, and then marketing the drug to treat juveniles with depression.

kind donations have played a significant role in our decision to take on this struggle for clinical trials transparency

James Cockerill a campaigns manager with Sense About Science says ‘letters of support, offers of help and kind donations have played a significant role in our decision to take on this struggle for clinical trials transparency.’ The amount of money donated to Alltrials currently stands at £72,877 from 2782 donations, and they will need more to stop Richmond Pharmacology and its backers succeeding in court. Donations are still needed here, and the petition in support of AllTrials can be signed here.

Richmond Pharmacology is a firm based in London that specialises in providing small scale clinical studies, usually testing a new potential drug, for the first time in humans, on a small number of volunteers. Their clients include leading pharmaceutical companies and biotechnology firms, and business is good with a reported 44.1% increase in total sales reported in 2014.

Organisations Supporting AllTrials

Organisations Supporting AllTrials

According to Cockerill, time and cost consuming games are being utilised in the oppositions legal strategy ‘Richmond has now changed their argument three times and has altogether abandoned some arguments it relied upon earlier…Richmond then asked the Court not to allow AllTrials to be heard. We had written to Richmond and the HRA outlining our planned argument to the court and inviting their response. HRA replied to us, Richmond did not. Instead they went straight to the Judge and asked him not to hear us.’ Then at the very last minute Richmond asked for a substantial change to the case ‘They want the Court to declare that no trial sponsor or person running a trial has any legal requirement to publicly register any clinical trial unless the sponsor has given a legally binding commitment to do so’.

Manchester County Court

Manchester County Court

Richmond are also trying to undermine the AllTrials case by telling the court ‘AllTrials references to international rules and protocols are irrelevant and will only add to their costs’. An initial hastily arranged court case, by Richmond, in Manchester on Monday the 29th of June 2015 was cancelled and has now been rescheduled for the 16th of July in the Manchester County Court. The case has a David vs Goliath element due to the limited funds of Sense About Science and the considerably larger funds of Richmond Pharmacology. The result of this case has serious implications for the health of people in the UK, and the rest of the world; let’s hope David wins.