Background

There is lots of work afoot to streamline the regulation and governance of health research in the UK – to make sure it does its job well to ensure we have high quality, well-regulated research but doesn’t put unnecessary barriers in the way of good projects going ahead.

This includes plans to set up a single regulator of health research – the Health Research Authority – which is up and running as a special health authority at the moment. The Queen’s speech just last week announced that the government is planning to publish  draft legislation to establish this as a non-departmental public body this year.

The EU Directive on clinical trials is also in the process of being revised in Europe. The current directive dates back to 2001, but since its introduction there have been difficulties in implementing the regulations and concerns that they may actually be leading to unnecessary delays and escalating costs. The European Commission held a consultation on how to update the directive in the first half of 2011 and we are expecting proposals later this year on how they plan to update the directive. This will then need to be debated by the European Parliament before it can be adopted across Europe.

The governance of health research in the NHS is also being overhauled. One well-recognised barrier to setting up research studies is the process of seeking research & development permissions from NHS organisations. Permissions are often needed from multiple organisations if projects are taking place across several sites. The government published a plan for growth back in March 2011 which set out to streamline the process of obtaining NHS R&D permissions. This introduced a 70 day benchmark for the first patient to be recruited to a trial. NIHR funding will become contingent on NHS organisations reaching these benchmarks so there are big incentives for them to streamline their processes.

There is a new duty to promote research on the Secretary of State, the NHS Commissioning Board and Clinical Commissioning Groups that was introduced by the Health & Social Care Act 2012 and as these new bodies get up and running, work is underway to scope out what these duties will look like in practice and how these can contribute to a culture of research in the NHS.

Patient records are a rich source of data for health research and lots of initiatives are underway to explore how we can improve safe and secure access to this data for research. The newly established Clinical Practice Research Datalink aims to support the sharing of this information safely and securely. A new NHS Information Strategy is expected imminently and an independent review of the balance between protecting patient information and its sharing to improve patient care is underway – the Caldicott review.  The government is also planning a consultation later this year about changes to the NHS constitution, asking NHS users if they want researchers to be able to access their health records unless they expressly choose to opt out.

What came out of February’s discussion?

Health Research Authority - Welcomed the speed with which it has been established as a special health authority and emphasised the need for it to work with the research community, patients and the public as it gets up and running and consider the functions it should take on to really create a streamlined and effective regulatory process for research.

Clinical trials - Welcomed the work the MHRA has done in the UK to streamline the process within the current european regulatory framework. Agreed that the UK research community should work together to engage with the revision of the clinical trials directive in Europe to push for the changes we want to see to allow a more proportionate approach to regulating clinical research.

Changes to NHS research governance - There is a lot of work underway to streamline NHS R&D permissions but there was a concern that there needed to be more coordination with other steps in the regulatory pathway to ensure this is effective.

Patient data - There was agreement that we need to get the framework and regulatory system right and that patients, the public and healthcare professionals need to be involved throughout the process as develop this. We also need to engage with the revision of the EU Data Protection Regulation which is happening now and will impact on the management of patient data in the UK – we have supported a joint statement outlining some of the issues with the proposed regulation.

The report concludes with a plan of action. Everyone involved in research needs to work together and listen to each other to get this right – the solution will involve all of us. That includes patients and the public who should have a say throughout the process of design and regulation of research. Everyone at all levels should champion research. And we need to monitor all this change and feedback to make sure we are getting it right and tackle it where we aren’t

Many medical conditions are in desperate need of new treatments and cures. Few medical research charities have the resources necessary to develop a new treatment through to market, so we rely on investment from government and industry to make this happen. A major stalling point is translational research; governments and charities fund early-stage/ discovery research, while industry typically tends to fund the development of treatments through clinical trials. As a result, a funding gap has always existed at the translational research stage where a novel idea from the lab is turned into a real potential treatment.

The valley of death – a widening barrier for new treatments

Alarmingly, this funding gap or “valley of death” has been widening as industry becomes increasingly risk-averse in tough economic climates, this is likely to impact the development of new treatments. But how do medical research charities play a pivotal role in what seems like an intractable situation?

Learning from the successes of others

The Cystic Fibrosis Foundation in the US paved the way for charities to step beyond advocacy and funding discovery research, becoming drivers in the development of treatments. In the UK, Cancer Research UK is a powerhouse in the development of new treatments for cancer. Whilst the activities of large charities are certainly inspirational, even small charities with limited resources can make a big difference and create momentum.

Action on Hearing Loss – the small UK medical research charity approach

Action on Hearing Loss (formerly RNID) supports people with a hearing loss or tinnitus. The organisation performs a wide range of activities, one of which is a small but active biomedical research programme. The programme focuses on one of the charity’s key strategies: to advance the development of new cures and treatments for hearing loss and tinnitus, two appallingly underfunded and overlooked conditions that together affect 1 in 6 in the developed world. For us the funding gap is more of a steep gorge than valley as there are no medications available to treat hearing loss, and few in development. With limited resources, we have been forced to think creatively about how we might mediate change.

The Translational Research Initiative for Hearing, or TRIH

We started out tackling this issue by funding discovery research but quickly realised we needed to address the entire R&D pipeline and involve all the major players. A key focus for us is engaging industry, which we do by providing free consultancy and market intelligence reports. Last year we launched TRIH , which specifically funds translational research and has 15 industry partners that can provide additional funding.

Creating momentum and real change

In March, we held the TRIH Summit, which brought together all the key opinion leaders in the field, from pharmas and biotechs, government, health services, research institutions, clinical centres and investor groups. Allowing such diverse groups to interact, discuss barriers and opportunities and feedback opinions has informed our strategies moving forwards and generated excitement and, significantly, collaborations.

Utilise your strengths

The unique position that medical research charities hold, sitting at the centre of the field and working with all sectors, allows us to play a key role in connecting stakeholders. An in-depth understanding of the research field and patient needs are merits from which to draw strength. Even with limited resources, medical research charities can have a significant impact.

Please email us if you have any questions or comment: trih@hearingloss.org.uk.

Background

Animal research is a small but important part of medical research to better understand disease and develop treatments that improve and save lives. It is strictly regulated in the UK and only conducted where the research is necessary and no alternative exists. The regulations demand high standards of animal welfare and include specific requirements for work to replace, reduce and refine of the use of animals.

The EU Directive governing animal research has recently been revised to raise and harmonise standards across the European Member States. This is intended to improve animal welfare and harmonise the rules across the EU which should make it easier for researchers and funders who work internationally. However, because this is a Directive and not a Regulation, Member States can choose how they implement the directive, so long as they meet the basic requirements. This means the UK has the flexibility to retain bits of our law where it is higher than the requirements in the Directive. Some UK standards are higher than those stipulated in the directive so the Home Office consulted last year on how they should update UK law. AMRC responded as part of a coalition of bioscience organisations.The process of updating UK law is called “transposition” and this must be in place by January 2013.

The APPG Medical Research held a briefing in the Commons earlier this year which included a very helpful guide to animal research and the Directive, you can download it here.

What has the Home Office said?

Lynne Featherstone, the Home Office minister responsible for the regulation of animal research, has said in a statement that they intend to “copy out” most of the Directive as it is but where the UK currently has stricter standards, maintain the UK’s priority for high animal welfare.

The Home Office has published a summary report of the consultation and their response – it’s really easy to follow going through issue by issue as they were outlined in the consultation, summarising the responses they have had and how they plan to act.

Of specific interest:

• The special protection for non-human primates, cats, dogs and horses will be retained, meaning that research using these will continue to require a much more rigorous justification.
• The ban on using great apes altogether will also be kept.
• The UK will also maintain care and accommodation standards where they are currently stricter than those defined in Annex 3 of the Directive.
• Personal licenses - The Directive does not require individuals carrying out experiments using animals to have personal licenses. The UK currently does and will continue to require this to ensure that only those who have had proper training are allowed to handle animals and conduct the experiments. The system of administering these licenses is currently complex and the Home Office does state that they plan to explore opportunities to simplify this process while maintaining the effectiveness of the licensing process.
• Research facilities - Facilities where research using animals is conducted are inspected very regularly by trained vets or medical doctors. The Directive specifies a minimum frequency of inspections, lower than those we have currently. The Home Office plans to continue its risk-based approach of regular inspections and has committed to “maintaining a strong and properly resourced inspectorate”.
• Section 24 of the current UK regulations prevent the Home Office from disclosing confidential information relating to animal research.  The Directive encourages greater transparency to promote the sharing of best practice and increase the refinement, reduction and replacement of animals in research. The Government recognises the difficulties with section 24 in its current form but balanced alongside the need to protect personal details, intellectual property and commercial information.  They plan to publish plans to revise Section 24 separate, in due course.

What does this mean for medical research?

The UK’s regulation of animal research is relatively strict among the European member states and the revised Directive’s main impact will be to bring the rest of the EU closer to the UK’s standards. The UK has chosen to maintain our standards where they are higher, so the UK’s regulatory framework will not change significantly.

We have welcomed the move to maintain the UK’s high animal welfare standards, which underpin high levels of public confidence and support for animal research for medical research where it is conducted to high ethical standards. We also welcome the continued focus on work to replace, refine and reduce the use of animals in research.

AMRC’s chief executive, Sharmila Nebhrajani said:

Today’s announcement outlining how the Home Office plans to update UK law means the public can continue to have the highest confidence in the conduct of animal research, which is a small but vital part of the world-leading research conducted here in the UK to improve and save lives. Independent polls time and time again show that over 85% of people support medical research using animals where it is conducted to high ethical standards and we welcome the government’s commitment to maintain these high standards whilst removing unnecessary bureaucracy.

The Home Office has developed their plans to update UK law in close consultation with all groups concerned, including the research community. They will continue working with them as they implement the updated regulations.

What next?

This is just the Government’s response to the consultation indicating how they plan to introduce legislation. They will now be in the process of drafting regulations to put this into practice and update UK law. They will be published as an affirmative Statutory Instrument (the affirmative bit means it must be debated by both Houses) and will go before Parliament to be agreed before they can become law. The deadline for the directive coming into force is January 2013 so, when you take into account summer recess from mid-July to September, time is tight for this process to be completed.

Background

The idea of a single regulator for medical and health research was put forward in an Academy of Medical Sciences report in January 2011 to streamline regulation, making the process more straightforward and easier to navigate.

In the Plan for Growth, published alongside the 2011 budget in March, the Government committed to establishing a Health Research Authority and they did so in December, making it a special health authority. This was a temporary arrangement intended to give the government more time to develop the body and allow Parliament proper scrutiny of the plans. It was announced that it would take on the functions of the Integrated Research Administration System (IRAS), the National Research Ethics Service (NRES).

Shortly after the HRA was established the Lords held a debate to discuss the Government’s plans to take the Authority forward. The health minister Earl Howe said there would be a consultation shortly on the movement of HFEA and HTA functions into the new Authority (as envisaged by the Academy of Medical Sciences). He also confirmed that the government see NIHR rather than the HRA as the body best placed to streamline the process of getting multiple NHS research & development approvals before a project can get off the ground – a current source of considerable delays. Peers expressed their concern that the body might not have enough powers to make the difference that is needed and feared that using separate legislation to fully establish the HRA (rather than include it in the Health and Social Care Bill) risked unnecessary delays.

What’s been announced in today’s speech

The Queen’s speech sets out the Government’s plans for legislation they are going to bring forward in the coming parliamentary term.

The speech announced that there will be a draft bill to modernise adult care and support in England and this will include establishing the Health Research Authority and Health Education England as non-departmental public bodies (NDPBs). As an NDPB, the HRA will have the independence that the medical research community has called for and will have authority over the whole UK (being a special health authority restricts it to England).

The Queen also said that there will be legislation to protect free speech and reform the law of defamation. This is the result of a long running campaign by Sense About Science, English PEN and Index On Censorship to reform the libel laws to redress what many see as unnecessary and disproportionate restrictions on free speech that restricts the exchange of ideas and information.

Good news for charities is promised in a bill to reduce burdens on charities, enabling them to claim additional payments on small donations. According to the BBC this will provide a new system of top-up payments similar to Gift Aid for small cash donations to charities. For donations of less than £20, charities will be able to claim back 25p for every £1 collected in the UK, up to a limit of £5,000.

What next?

A Joint Committee of MPs and Peers will be set up to scrutinise the draft legislation when it’s published. A report will be produced and the Government will take this into consideration when writing the full bill. The bill will then go through the normal parliamentary procedure with debates and further scrutiny in both Houses.

There will be seperate consultations on the futures of the HFEA and HTA, as promised by Earl Howe. We won’t know whether the functions of these bodies – or what others – will be included in the draft legislation until it’s published.

AMRC chief executive Sharmila Nebhrajani has welcomed today’s announcement:

Independent, balanced and effective regulation is crucial for medical research and patient care. We welcome the announcement in the Queen’s speech that draft legislation will be introduced to establish the Health Research Authority as a non-departmental public body and look forward to working with the Government as we progress together towards a better regulatory framework that works for everyone.

It’s great to see the HRA progressing and AMRC will continue to work with its members and the Government to help ensure the authority works for researchers and patients.

If you are thinking of responding, Rare Disease UK has lots of resources you might find useful to get a handle on other people’s thoughts on the plan including  powerpoint presentations from a series of webinars they held and really usefully they have gone through the entire plan, comparing it with the proposals they made in their Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy report so you can easily see which of the RDUK recommendations the government is and isn’t planning to do, or what they are planning to do instead. Great idea – I’m loving this for unraveling the ins and outs of the consultation.

Background

Rare diseases affect a lot of people – 1 in 17 people at some point in their life. The UK signed up to a Council of the European Union communication on rare diseases back in 2009 . This committed the UK to developing a national strategy for rare diseases by the end of 2013.

Those with rare diseases and charities and organisations representing them teamed up to create Rare Disease UK – a national alliance which set out to campaign for the health departments across the UK to develop this strategy. AMRC are part of Rare Disease UK. They established working groups of experts and produced a report called Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy recommending what a strategy should look like if it is going to be comprehensive and effective, and accurately reflect the needs of the rare disease community.

Rare Disease UK has also worked closely with the Department of Health and devolved parliaments to champion the need for the strategy and what it should cover.

The Department of Health launched their proposals for a UK plan for rare diseases aimed at improving the services, treatment and support that people with rare disease receive on 29 February. They are now consulting on the contents of the plan – the consultation closes on 25 May.

There has been some concern over the contents of the proposed plan, whether it goes far enough and wanting more detail on how some of the ideas will be implemented. Rare Disease UK are encouraging as many people as possible to respond to the consultation with their views.

What next?

Once the consultation has closed, the government will publish a summary of all the responses they get to this consultation alongside any further action they will take. So responding to this consultation will ensure they consider all our views on the plan as they decide how to take this forward. The plan includes proposals covering research and the role of patients in influencing policy and fostering research so AMRC will be responding in these areas where we can add expertise.

After much discussion, the Department of Health has now recognised this. On 4 May, they published newly agreed guidelines called AcoRD (Attributing the costs of health and social care Research and Development). AcoRD explicitly states that  AMRC charities will NOT be expected to pay some of the research costs (such as data collection or preparing for regulatory approval), where these activities are being carried out by staff employed by the NHS/NIHR Clinical Research Network.

This exception will only be made available to AMRC member charities. The full list of exempted costs is:

1. Local study trial co-ordination and management.
2. Data collection needed to answer the questions that the research study is addressing (including collecting data for and completing the report).
3. Regulatory preparation and compliance including obtaining ethical approval and complying with the Medicine for Human Use (Clinical Trials) Regulations 2004.
4. The time taken by chief and principal investigators (CI and PI) to explain the study to professional colleagues, and to understand, the research elements of a study. For example the time taken to explain the criteria for patient eligibility or to explain the randomisation protocol.
5. Sponsorship fees such as MHRA fees, and CTA annual renewal fees.

Why is this important?

The NHS has undergone a major change in the past five years, increasing the number of staff involved in supporting clinical research, and streamlining the approach taken by NHS Trusts to ensure that good quality research can take place.

At the same time, a NIHR Clinical Research Network has been developed, first in topic areas like cancer, and then across the whole of England. The Network is set up to ‘provide the infrastructure that allows high-quality clinical research to take place in the NHS’.

Charities have been frustrated that they have been expected to pay for this research ‘infrastructure’, rather than focus their funds on the direct costs of research. Through the AcoRD guidance the Department of Health has recognised that charities are a special case because their funds come from donations by patients and the public. Section 2.2 says:

In particular, the Department of Health’s support for research infrastructure for charity-funded research now has similarities with the charity Research Funding Stream of Quality-Related funding that supports the full economic cost of charity research in universities.

This new guidance was welcomed by Sharmila Nebhrajani, chief executive of AMRC:

‘We polled nearly 1,000 adults last year; 92 per cent told us they believe it’s important for the NHS to support research funded by charities. We welcome the helpful approach of AcoRD which does just that. This Department of Health support will maximise the impact of charity investment in NHS research by ensuring that the money goes directly to funding research projects that lead to better health outcomes for patients.’

What do I need to know?

If you are an AMRC charity funding research in the NHS, this will impact on the research you fund - giving clarity on the costs you are responsible for covering. You will need to look at the guidance and refer to it in your application guidance notes. We have produced a detailed briefing to guide you.

You should also encourage your researchers to talk to their local NHS R&D departments and local clinical research networks to ensure the costs are attributed correctly.

What next?

The guidance will come into force for all applications in England that use NHS resources submitted to any funder after 1 October 2012. Ahead of this,over the summer, a small group of research funders and the NIHR Clinical Research Network will meet to oversee the implementation of this guidance and ensure that everything runs smoothly. AMRC will also be closely monitoring three areas of continuing concern:

• where trusts are recovering the research time of employed clinicians
•  pharmacy costs
•  any examples of the guidance increasing bureaucracy.

We are planning a workshop for our members – more details to come. And we’ll continue to keep you updated – please get in touch with me with your experiences, particularly if you encounter problems of increased bureaucracy or inappropriate costs which we can follow up.

To ask Her Majesty’s Government what has been the resource budget of the Office for Life Sciences in each year since it was established; what it will be in each of the next three years; what discussions (1) the Secretary of State for Business, Innovation and Skills, and (2) the Minister of State for Universities and Science, have had with HM Treasury Ministers about the Office since July 2011, and with what results.[HL16960]

The Parliamentary Under-Secretary of State, Department for Business, Innovation and Skills (Baroness Wilcox): The Office for Life Sciences (OLS) was established in January 2009 comprising officials from the Department for Business, Innovation and Skills (BIS), HM Treasury, the Department of Health (DH) and UK Trade and Investment (UKTI). The OLS had a remit to work with the life sciences industry to build a sustainable and integrated industry in the UK in the future. Its work culminated in the Life Sciences Blueprint, published in July 2009, followed by Life Sciences 2010: Delivering the Life Sciences Blueprint, published in January 2010.

In May 2010, the OLS was restructured with all staff now funded by my department. The OLS continues to work closely and collaboratively with the Department of Health to ensure the UK maintains and builds on its world leading position in life sciences.

Given the cross-departmental working arrangements prior to May 2010, data relating to the resource budget are only available from that point, as follows:

Financial Year	Month	Budget £
2010-11	May	1,185.544
2010-11	June	970,050
2011-12	April	692,700

In December 2011, the Prime Minister launched the Strategy for UK Life Sciences. This sets out an ambitious programme of activity designed to position the UK as the global hub for life sciences and the location of choice for investment, thus contributing to sustained economic growth.

The OLS is currently undergoing a reorganisation to ensure the strategy implementation is properly supported. The reorganisation will utilise vacant posts, and operate within the same staffing envelope and resource budget to ensure more focused responsibilities and greater efficiency. It is not possible at this time to confirm what the exact resource budget will be in 2012-13 but it is likely to remain broadly the same as for 2011-12.

No discussions about the OLS have taken place between HM Treasury Ministers and BIS Ministers.

Background

Back in October, MRC held a consultation and a workshop to think about the link between investing in research and the economic impacts that come from the findings and discoveries that are made.

There have already been some really interesting attempts to model the link between investing in medical research and the benefits we get. Medical Research: What’s it worth? developed a basic model showing that for each pound invested by taxpayer or charity donor in cardiovascular disease and mental health research, a stream of benefits is produced equivalent to earning 39 pence and 37 pence respectively each year ‘in perpetuity’.

MRC set out to explore the sort of questions they need to be answering to analyse the extent of this contribution to economic growth in more detail and produce more robust models to understand what is going on.

What do they want to look at?

At the workshop several themes were identified:

• better understanding the spillovers from medical research that effect the UK economy
• looking at how research in the UK differs from international research initiatives
• the effectiveness of investment in translational research
• how medical devices and diagnostics are developed
• interactions with pharmaceutical and biotechnology industries
• the impact of medical research on quality of life

MRC want this research to help inform and develop

• policy recommendations to shape the medical research funding strategy in the UK.
• a better understanding of the returns that come from investment in research.
• International/cross funder comparisons of different environments/policy approaches, which highlights ways to maximise impact.
• Identifying what success and indicators of impact look like so we can get a grasp on the impact of research.
• Learning from missed opportunities or negatives results.
• Understanding the contribution of academic research and MRC’s input into this.

What next?

The successful projects will be picked in September 2012 and funded for one year initially. They will provide an interim report of their work in May 2013.

I’m really interested in seeing MRC’s findings as we continue to have conversations with the treasury about the need to invest in the UK’s science base and support for medical research. It may also help us unpick how different funders are involved in driving research forward to improve healthcare and explore how we can fund most effectively.

Background

If the life sciences is going to deliver better healthcare for patients and be a growth area for the UK economy, we have to get better at translating basic research into commercial applications, i.e. things we can make and sell and can help patients, like new drugs and treatments. At the moment there are barriers to this translation process, with a lack of funding to drive ideas through.

David Cameron referred to this “Valley of Death” and announced government measures to tackle this when he launched the life sciences strategy on 5 December. The committee’s inquiry was launched later that month to look at how the government and other organisations can improve the commercialisation of research.

What did the experts say about medical research?

There were two sessions of evidence on the Wednesday morning, the second sitting featured five experts in the life sciences:

• Dr Ian Tomlinson, senior vice president, GlaxoSmithKline
• Dr David Tapolczay, chief executive officer, Medical Research Council Technology,
• Dr Gareth Goodier, chairman, Shelford Group,
• Dr Andy Richards, biotechnology entrepreneur and business angel
• Dr Ted Bianco, director of technology transfer, Wellcome Trust

The chair, Andrew Miller MP, kicked things off by asking what makes the UK so good at life sciences. The panel all agreed with the previous session’s panel that successful innovation comes from clusters – geographic areas where academia and big and small industry sit side by side. Cambridge in England is one example and Cambridge in Massachusetts, USA, is another. These allow individuals to hop in and out of different jobs and take the risks that are required to truly innovate in small start-ups. The UK has long-established research strongholds and a well-trained workforce that make it a world-leader. According to Dr Tomlinson, places that bring scientists together, like the Stevenage Biomedical Catalyst research park, are “like the canteen at the MRC Laboratory of Molecular Biology, where a lot of these Nobel prizes came from in Cambridge”.

Dr Richards described the logic behind big pharmaceutical companies investing in research parks that bring in other small biotech firms, like GSK have done in Stevenage. He said that the pharmaceutical industry is moving to an open innovation R&D strategy as more and more (currently about 50%) of their drugs come from small biotechs. A “diverse and dynamic ecosystem” allows for natural selection to drive innovation he said. Dr Bianco added that the Wellcome Trust’s involvement in Stevenage meant that the project would be viewed with neutrality from the outside, making it more attractive to smaller firms.

Dr Tapolczay said that he hopes the Francis Crick Institute will be a huge draw for big pharma to come to the UK as it shows our commitment to basic biomedical research. The facility, funded by Cancer Research UK, MRC and the Wellcome Trust, along with other partners, will create a talent pool of great scientists, great innovation and the entrepreneurs that companies like GSK need, the enquiry heard.

Stephen Mosley MP moved the discussion on to the NHS, asking how such a large purchaser influences innovation. Dr Richards said that the “NHS does not take up… new drugs, new technologies, new software systems, new anything”. This makes it incredibly hard to find investment for new technologies that the NHS will be the main market for. Dr Goodier added that the poor IT systems in the service impeded research. The expert panel expressed frustration that the NHS isn’t the powerhouse for research that it could be, with Dr Richards saying “if we can gather the information from well collated records… we have everything in place and if we could do it, it would be the big game change”.

At the end of the session Roger Williams MP asked the panel if EU regulations hampered investment. Surprisingly, no-one had any complaints bar a brief mention of employment law.

What does this mean for medical research charities?

It’s interesting to hear the director of GSK talk about how the old mass-industrial approach to drug development was wrong and stifled innovation. Like the new industry strategy of bringing diversity back into drug development using small out-of-house biotechs, charities too create a diverse ecosystem that allows a range of approaches to be tried and tested. As Dr Bianco told the Committee, charities like Wellcome are in a powerful position to support R&D before it reaches the stage at which private investors can be sure of the idea’s commercial viability.

The experts also highlighted some of the issues in the NHS that AMRC is currently looking at. Efforts are already underway to improve access to the wealth of data that the NHS holds. We are specifically working on the use of data in research by exploring how to raise public awareness of its value and hosting a data-themed summer reception in parliament, at which you can help us demonstrate the power of data to parliamentarians. We are also looking at how research is conducted in the NHS and where research is hindered, and feeding into discussions about how the NHS can be a driver of innovation, through its purchasing power for example.

Charity’s want to see their research turned into treatments that help patients. We are concerned about promising drugs falling into the “Valley of Death” and charities are engaged – as described by Dr Bianco – in tackling some of the problems highlighted in this enquiry.

What will happen next?

AMRC has submitted written evidence to the enquiry in which we expressed the sector’s concern that research does not get stuck but is translated into new therapies and pointed to positive steps that the charities are already taking to address these challenges and approaches the government could consider. You can read it here.

This is now the second phase of the science and technology committee’s inquiry where they invite experts into parliament to question. There are more of these evidence sessions to come as the committee is looking at the whole of UK science and technology, not just the life sciences. We’ll be following the enquiry’s progress and look forward to reading the final report.

We’re also keen to host guest posts – a great way to get information about work you are doing out to a broad medical research/science policy audience. Just get in touch.