News and Blog
One of the most important things about Empower: Data4Health’s drive for more effective use of data in the delivery of healthcare and medical research, is learning from best practice in other fields. Callum Staff is the Principal Data Scientist at the Department for Education, and shares with Empower different applications and types of data in the education space.
The Early Access to Medicines Scheme (EAMS) reached its third birthday in April 2017. When the Scheme was opened there were high hopes that it could result in patients accessing promising new drugs for life threatening and life limiting diseases months, or even years, before they were licensed. There were high hopes too that it would offer what amounts to real-world data on the value of new drugs that could help companies navigate approval processes and secure funded patient access. Three years on, have those ambitions been delivered?
Empower: Data4Health was privileged to join a hundred patient organisations, academics and policy makers at the Wellcome Trust this week to launch the new Understanding Patient Data initiative.
A new app which detects early signs of kidney failure is now being used to improve care for some of the Royal Free’s most vulnerable patients. Using an instant alert system, the app, known as Streams, directs...
This week the Royal Free London NHS Foundation Trust announced a partnership between itself and DeepMind to work together to develop a mobile clinical application called Streams. Please click this article for the whole press release from the Royal Free.
James Hargrave writes for the Huffington Post on how a new generation must be as willing to share patient information as they are to share personal information on social media.
On the 20th September Data4Health's Graham Silk spoke at Google DeepMind's Patient and Public Engagement Event.
Dame Fiona Caldicott has at last released her report into how the NHS uses and safeguards patient data. Empower: Data4Health has welcomed the report and looks forward to digesting its recommendations in full.
In 2001, at the age of 41, I was diagnosed with chronic myeloid leukaemia (CML) following a scan to investigate what I thought was a minor knee injury. I was told that I only had three years to live, which, given that my wife and I had three young children, was obviously a devastating verdict.
The Early Access to Medicines Scheme (EAMS) has reached its second birthday (April 2016). The scheme aims to provide patients earlier access to drugs before they are licensed but only when the preliminary data suggests that the balance of benefit and risk is positive. Not only that, there also has to be an unmet need to treat a condition for a life threatening or life limiting disease. After two years, is the scheme maturing nicely, or facing the terrible twos?
Christina Knudsen writes for Empower: Data4Health on her struggle with Ampullary Cancer.
The Access to Medical Treatments (Innovation) Bill and the Accelerated Access Review here in the UK are important recent contributions to the bid to get drugs to patients with unmet need quicker. However, in the area of orphan drugs and rare diseases, any solution ultimately needs to be considered at a global level
The process of drug trialling has taken on a relatively new important phase. Post-marketing surveillance strategies are becoming a necessary part of an orphan drug manufacturer’s responsibilities.
We're very pleased to announce that Empower:DataHealth was launched on Tuesday 23rd February in the House of Commons.
Speaking about her daughter at the launch of Empower: Data4Health in Parliament on 23rd February 2016, Amanda Walburn-Green explains Georgia's story
Jo Churchill is MP for Bury St Edmunds, and two times cancer survivor. She is a passionate advocate for patients rights, and for driving the more effective use of data in healthcare. Empower is very lucky to have her support.
Big data visionary, innovation & precision medicine expert, and Empower's new spokesman on data reforms, Anoop Maini outlines the route map to deliver the big data environment which would optimise patient health, system sustainability and economic potential.
Empower looks forward to seeing the Access to Medical Treatments Bill continue its journey through the Commons tomorrow – and continue it must!
There is no denying the ambition and scope of the Accelerated Access Review (AAR). If such a review was under way in 2012 Les Halpin may have not felt quite so compelled to start a patient campaign, as much of what is called for in the AAR chimes closely with his original vision.
Today the Access to Medical Treatments (Innovation) Bill was debated at 2nd Reading in the House of Commons. It has now successfully scaled that hurdle onto the committee stage where it will receive further scrutiny.
Jack Scannell, friend to the Empower: Access to Medicine campaign, enters a debate in the British Medical Journal on patients wanting faster access to treatment and perceived motivations of the drug industry.
Empower: Access to Medicine is very proud to have been published in a recent collection of essays that featured in Bentham Science.
Here is the foreword from Professor Sir Peter Lachmann, an adviser to Empower, laying out the scope of the collection.
Susie Hills, Managing Director at Graham-Pelton, a friend of Les Halpin's has written a piece about Les' success as a campaigner.
Further to our report assessing the progress of the Early Access Scheme (EAMS) a year on from its launch, Leela Barham has written a thought provoking article on EAMS' success so far.
Empower: Access to Medicine releases its latest report examining the Early Access to Medicines Scheme a year on from its launch.
Yesterday Empower: Access to Medicine were proud to have joined the Duchenne Muscular Dystrophy community for a powerful lobby of Parliament and 10 Downing Street.
Dozens of children with Muscular Dystrophy, and their families, joined MPs and Peers in Portcullis House for a summit on a promising treatment - Translarna - as well as delivering a 24,000 strong petition to Number 10.
On 26th November Empower: Access to Medicine brought together the MHRA, Department of Health, charities, Peers, leading academics and campaigners for a discussion led by the President of the Royal Society of Medicine, Babulal Sethia, and Chairman of GW Pharmaceuticals, Geoffrey Guy.
George Freeman, life sciences minister, has pledged to create a “lit runway” for new drugs and devices from clinical trials through to adoption in the NHS that would “make Britain the best place in the world to get quicker access for patients to innovative medicines”.
Leela Barham, a health economist, writes our latest article examining the progress of the Early Access to Medicines Scheme (EAMS). Her piece comes ahead of a pending roundtable discussion (26 November) at the Royal Society of Medicine featuring a number of expert commentators including the new President of the RSM, Babulal Sethia.
Geoffrey Guy discusses prescribing unlicensed medicines and the use of GW Pharmaceuticals’ new treatment for epilepsy, Epidiolex, in a précis of the speech he delivered at Early Access Parliamentary Reception.
Empower: Access to Medicine was invited to join an online panel debate chaired by ITV’s Dr Ranj. Alongside Dr Charlie Chan, Professor David Walker, Alex Smith of Harrison’s Fund and Lord Saatchi, the group debated what the Medical Innovation Bill might mean for patients.
Claire Halpin, widow of Empower founder Les Halpin, conveys her thanks to those who came together for the manifesto launch on 25th March. Claire only wishes Les had been there to see the huge step taken with the Early Access Scheme.
Health Minister, Earl Howe, delivered a keynote speech at Empower’s Parliamentary reception on 25th March 2014. Here’s his speech in full.
Patient organisations believe that their voice and engagement would make major, positive changes to priorities at several stages in the medical innovation process.
On Tuesday 25th March the Empower: Access to Medicine campaign were joined by Health Minister Earl Howe, patients, families, campaigners and biotechs for a hugely successful lobby of parliament.
It’s a huge day for Empower: Access to Medicine as the Government have now committed to an Early Access Scheme adopting many of the measures proposed by Empower. There are challenges ahead, but this is a huge step on the road to progress for patients!
Dr Jack Scannell, an independent consultant and former pharmaceutical market analyst, writes about the unpredictability of forecasting the success of a new drug.
We need to demonstrate to the Government and Parliament that this is more than a policy issue; the lack of progress in drug development affects real people and real lives.
That is why we are hosting a lobby of Parliament on 25th March in the House of Commons 4pm-6pm. We are looking for patients, and/or their families, to attend with their constituent MP so that we can get this issue onto the agenda of backbenchers.
Steve Bates, CEO of the BioIndustry Association, writes about Empower’s meeting with Health Minister Earl Howe. Steve was one of a number of delegates debating the key barriers to drug development and early access for patients.
The excellent research and campaign group, findacure, explain why fundamental diseases are so important to medicine; and invite you to join them for an exclusive workshop.
Leela Barham, an independent health economist, writes our first blog of 2014 on the Government's recent Strategy for Rare Diseases.
The latest newsletter from the Empower: Access to Medicine campaign.
This week our blog page features an article by Dr Brian Dickie, Director of Research Development at the MND Association, in which he looks at how drug trials are designed.
Empower: Access to Medicine won a Highly Commended Award, in the Health and Wellbeing category, at last night’s PRCA Awards.
Geoffrey Clifton-Brown, Les' local MP, has wirtten an obituary for the Guardian website.
The Empower: Access to Medicine campaign has been shortlisted for a national public relations award
We are saddened to announce that Les Halpin has passed away, aged 56.
If you would like to donate to the campaign please transfer your donation to Empower using the following details:
Account number: 63486087
Cheques can also be made payable to Empower: Access to Medicine
Empower: Access to Medicine releases its first policy report Early Access to Medicine - A Year On
Empower: Access to Medicine supports Lord Saatchi's Medical Innovation Bill
Empower: Access to Medicine will be releasing its first policy report looking at the barriers to drug development.
Hana Ayoob, Oliver Timmis and Nick Sireau of the AKU Society write about the practicalities of designing clinical trials.
The latest newsletter from Access to Medicine founder, Les Halpin.
Julian Savulescu,Uehiro Chair in Practical Ethics Director, Oxford Uehiro Centre for Practical Ethics, University of Oxford, writes an excellent blog exploring the ethics of drug approval
Health Economist, Leela Barham, explains NICE's approach to assessing drugs for orphan and ultra-orphan diseases.
This week Empower has been referenced in two parliamentary debates regarding the drug development process.
Les Halpin writes about last week's crucial vote, in the EU Parliament, on Clinical Trials
On 15th April a panel of academic, political, pharmaceutical and patient experts gathered in Parliament to to start the consultation process for the Halpin Protocol. You can watch a video of the summit and read the transcript here...
Les Halpin's latest newsletter to Empower: Access to Medicine supporters.
Oli Rayner, a patient advocate with Cystic Fibrosis, writes about clinical trials and his support for Les Halpin’s campaign.
As part of a Sky News piece on the Drury's battle with accessing vital cancer drugs for their daughter, Les Halpin wrote a special piece for the Sky News website.
Les Halpin writes about the launch of the Halpin Protocol; a blueprint framework for patients suffering from certain life-threatening diseases. It would allow patients to make their own informed choices about the risks of participation in Clinical Trials or taking drugs and therapies originally intended for other conditions.
A panel of academic, political, pharmaceutical and patient experts gathered in Parliament this week to to start the consultation process for the Halpin Protocol.
Lindy Jones, Author of The Voice in My Head is Perfect, writes about her diagnosis with MND and her experience of taking part in a drug trial.
Les Halpin looks back at the pioneering work of Dr Edward Jenner in his search for a vaccine against smallpox.
International journalist, writer and commentator Lois Rogers writes about how the blame culture limits chances for sick people.
Les' Halpin writes about the amazing coverage the campaign has recently received.
Empower: Access to Medicine has launched a Facebook page called ‘Right to Try’ to involve the patient voice in its campaign to accelerate the process of drug development and improve access to medical drugs for people with rare and life-threatening conditions.
Les Halpin has been interviewed by John Humphrys on BBC Radio 4’s Today Programme about giving people with rare, life threatening conditions the right to try unlicensed drugs.
Les Halpin has set up an e-petition to raise support for those with rare, life threatening serious conditions for which there is no satisfactory treatment currently available.
Les Halpin has been inteviewed by Sunday Times journalist, Lois Rogers, on his drive to improve access to medicine
Les Halpin has written a blog welcoming the GlaxoSmithKline decision to publish the data on all drug trials conducted by the company since its foundation.
Geoffrey Clifton-Brown MP has written an article for Politics Home's Central Lobby.
Empower: Access to Medicine has made a submission to the public consultation on the NHS Constitution. Empower welcomes the opportunity to make a submission to the Consultation and was particularly encouraged by the commitment to further invlove patients in their treatment.
Pharma Times, one of the UK’s Leading pharmaceutical and health publications, has run a news story in their online edition following the Westminster Hall debate on access to medicine for people with terminal illnesses http://bit.ly/UpFYgl and leads on Empower: ATM’s call for more patients to become involved in campaigning for change
Geoffrey Clifton-Brown MP led a debate in the House of Commons calling upon the Government to urgently accelerate the speed at which patients with rare and life threatening illnesses can access drugs (9.30am, Wed 23rd Jan)
This week’s Times leader 'The Drug Test' (10th January 2013) goes to the very heart of the issue that Empower is campaigning for - transparency.
Drug development is hugely expensive, which means that only large companies with deep pockets can develop them. Professor Lachmann explains the litigation system that drives up those costs.
I would like to take this opportunity to thank you for all your support this year; I have been truly overwhelmed by how much progress the campaign has made. The last month has been particularly busy for us and I would like to share with you some highlights.
The issue of slow drug development and lack of approvals for new medicines, particularly in neurology, was recently raised in parliament. CASMI’s support for The Empower: Access to Medicine campaign was announced and we will continue to strive towards creating a more productive environment for new treatments for neglected diseases.
Recent announcements on the UK Life Sciences Strategy and plans for mapping the DNA of over 100,000 people with rare diseases marks a significant step in the quest for new treatments. However, as Geoffrey Clifton-Brown, Les Halpin’s Constituency MP, writes it is not the whole story.
A couple of weeks ago I took part in an important debate in the House of Lords on improving neurological services in the United Kingdom.
It was an opportunity to highlight a neglected subject; one with some alarming statistics that I believe deserves wider attention in Government and policy circles.
Orphan medicines are used to treat some of the rarest conditions; conditions that affect less than 5 per 10,000 people in Europe. Leela Barham, independent health economist and 2020health research fellow talks about the challenges faced in developing new drugs such as cost, knowledge, regulations...
Empower: Access to Medicine campaign raised in House of Lords debate on improving neurology services
20 November 2012, House of Lords: Baroness Masham of Ilton debated the lack of drug development for patients with rare or life-threatening conditions in a Parliamentary debate. She referred to the Empower AtM campaign and asked the Government what it will be doing to speed up the drug development process.
Alastair Kent, Director of Genetic Alliance UK: The pursuit of safety when granting a licence to a new medicine is obviously important. Given that there is no such thing as a completely safe drug, the issue becomes one of establishing whether or not the anticipated health gains for patients are sufficient to outweigh the risks inevitably associated with prescribing a powerful (and potentially somewhat toxic) medicine to a patient with a serious and possibly life limiting disease.
I was thinking about this the other day when a spot on the TV news talked about a tragic incident where a boy had been struck by lightning outside his school. Rounding up, they said that this was a very rare incident: there were 12 cases of lightning striking individuals in the UK each year of which 3 usually ended in fatalities. I then compared this with my own condition, MND, which is described as a rare disease. Some 5000 people have MND in the UK, and about 1500 die each year. Sounds a lot less rare than being struck by lightning.
The Access to Medicine campaign is a unique one, created for patients by patients.
Since being diagnosed with Motor Neurone Disease in May 2011, I have done a huge amount of research on the Internet and talked to as many experts as I could find in order to understand the disease that is probably going to kill me.
Patients with rare, life threatening genetic conditions should be given greater powers to take part in clinical trials and have earlier access to medicines, according to a new campaign launched in the UK.
Empower: Access to Medicine debate - 12 September 2012 - The King’s Fund, London