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Patients tell how clinical research changed their lives

Press Releases   •   Nov 28, 2013 13:53 GMT

A new consumer poll shows 66% of people feel that getting more chance of a new or better treatment is the only reason to take part in a clinical trial.

But a new national campaign is highlighting that clinical research can have a positive impact on people’s lives in a whole range of different ways. 

The “research changed my life” campaign has been developed by the National Institute for Health Research (NIHR) Clinical Research Network - the research delivery arm of the NHS.   The campaign uses the inspirational experiences of research participants  (via video-diaries, audio stories and film) to raise awareness of the broader benefits clinical research can have on patients, their families and carers.

National Institute for Health Research, Clinical Research Network Chief Executive Dr Jonathan Sheffield said:

“”Research changed my life” highlights the invaluable role that clinical research plays in society, all over England.  The campaign shows that taking part in clinical research is not just about direct health impacts - it has a wider role to play in connecting patients with their condition, which brings many  benefits to their lives and the lives of their family members or carers.


The National Institute for Health Research - Clinical Research Network:  delivering research to make patients, and the NHS, better.

A new campaign is helping patients to share their inspirational stories about the impact that taking part in clinical research has had on their life.

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Figures show "new high" in NHS patients participating in clinical research

Press Releases   •   Jul 01, 2013 09:59 BST

A report released by the National Institute for Health Research Clinical Research Network (the clinical research delivery arm of the NHS) shows that more than 630,000 NHS patients in England took part in clinical research studies last year – the highest level since the Network’s figures began.

Clinical research is a vital part of the work of the NHS, and a commitment to conduct, promote and use clinical research to improve patient care is part of the NHS England Constitution. 

Funded by the Department of Health, the NIHR Clinical Research Network supports the delivery of clinical research in the NHS in England. The Network does this by funding research nurses to identify suitable patients, and carry out the clinical activities required by the studies.  It also provides funds to cover the cost of using scanners, x-rays and other equipment for research purposes. 

For the past six years, the Network has been collecting data on the number of patients who volunteer to take part in clinical research studies, and has seen the trend for participation increase year on year.

Dr Jonathan Sheffield is chief executive of the NIHR Clinical Research Network.  He said:

“According to our latest poll, 79 per cent of people think it is important for the NHS to carry out clinical research – whilst less than three per cent think it is unimportant.  There is huge public support out there for research, but there also needs to be a good mechanism for identifying patients who are suitable for particular studies, and asking them if they would like to get involved.  The NIHR Clinical Research Network’s nurses provide that mechanism, and through their work we have seen the annual number of patients taking part in clinical research triple over the last six years.  That is fantastic news, and I’d like to thank all the patients and carers who have taken part in research, and who have made a contribution to improving NHS treatments for everyone.”

According to Dr Sheffield,99 per cent of NHS Trusts in England now carry out some clinical research studies, but he still believes there is more to do.  He said:

“Our vision is for participation in a clinical research study to be a treatment option for all patients, no matter where they are treated or what condition they have.  We are still a way off that, but with the number of patients involved in clinical research up seven per cent last year, things are heading in the right direction.”

The National Institute for Health Research - Clinical Research Network:  delivering research to make patients, and the NHS, better.

A report released by the National Institute for Health Research Clinical Research Network shows that more than 630,000 NHS patients in England took part in clinical research studies last year.

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Mystery shopper campaign highlights NHS shortcomings in promoting clinical research

Press Releases   •   Jan 10, 2013 12:21 GMT

Many NHS patients are hitting an information "brick wall" when it comes to finding out about clinical research, according to the results of a mystery shopper investigation published this week.

The mystery shopper investigation was commissioned by the National Institute for Health Research Clinical Research Network, and involved visits to 82 hospital sites across 40 NHS Trusts in England.  

For each of these, mystery shoppers examined the basic points-of-contact for patients (reception desks, patient advice services, patient information centres, noticeboards and hospital websites), to assess whether patients have easy access to information about local  clinical research opportunities, and how to get involved.

Results showed that:

91% of the NHS sites visited did not have information on clinical research opportunities in the obvious places where patients would expect to look (info boards/centres, in reception areas or waiting rooms)

-   Only 34% of the sites visited had information about clinical research on their websites that was useful to patients

-   46% of reception desks told the mystery shopper that they did not do research, or failed to offer any suggestions about what to do next

-   More than half of the sites (55%) were unable to provide useful information about clinical research through their Patient Advice and Liaison Service

Clinical research is the way in which evidence is gathered about "what works" in order to improve patient treatments for the future.  It is considered to be core business for all NHS Trusts, and is enshrined in the NHS Constitution.  This includes a commitment to the promotion and conduct of clinical research, and a pledge that the NHS "will do all it can" to make patients aware of relevant research opportunities.  The NIHR Clinical Research Network mystery shopper initiative set out to test how well NHS Trusts were delivering on this Constitutional pledge with regard to research.  

The NIHR Clinical Research Network is working to develop a research culture in the NHS.  It does so by providing NHS Trusts with special funding to cover the cost of research nurses and other clinical research delivery staff, who identify and approach patients about relevant research opportunities.  As a result, the number of patients involved in research has more than doubled since 2007, with a record 595,000 patients taking part in studies last year.

However, whilst work on the wards is on the up, the mystery shopper project shows that most NHS Trusts visited as part of this survey are doing little to raise general public awareness about local clinical research opportunities, or provide basic information to support patient choice.  This leaves most patients unaware about the research possibilities that may be open to them, unsure about what to do if they are interested in getting involved, and completely dependent on their clinicians for any information about local opportunities to participate in a trial or study.

Commenting on the implications of the mystery shopper findings, the NIHR Clinical Research Network's chief executive, Dr Jonathan Sheffield, said:

"From recent polls, we know that 82% of the public think it is important for the NHS to offer patients the opportunity to take part in clinical research.  But we also know that there is some way to go before every doctor, in every department of every hospital, thinks about research as a possible treatment option, and discusses it with his or her patient.  We are doing everything we can to address this on the wards and in the surgeries, by working with doctors and nurses and encouraging them to engage with research.   But NHS Trust Boards also need to step up to the mark, and make sure that they provide patients with the information they need in order to ask their doctor about research and find out if it is suitable for them.  

"Before we started this initiative, we knew that approximately 30 per cent of people would expect to find patient information about research in a reception area or on the Trust's website.  Unfortunately, our mystery shopper campaign showed that too few NHS Trusts provide even basic information in these obvious places, or know where to signpost patients appropriately when asked.  All too often it seems that patients who ask about clinical research hit an information brick wall.  Given the importance of clinical research in improving the quality of patient care, and helping the NHS to spend its budget wisely on treatments that really work, that has got to be a real concern." 

Following on from the mystery shopper findings, the NIHR Clinical Research Network plans to launch a resource pack for Trusts, offering materials to help them to promote research opportunities to patients.

Meanwhile, patients interested in research can visit: www.crncc.nihr.ac.uk/ppi to download information resources, and access a database of clinical trials.


The National Institute for Health Research - Clinical Research Network:  delivering research to make patients, and the NHS, better.

New report shows 91% of NHS Trusts surveyed are not providing information to support patient choice

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Statistics show state of clinical research in the NHS

Press Releases   •   Nov 16, 2012 11:59 GMT

Clinical research in the NHS is thriving, according to new figures published by the National Institute for Health Research Clinical Research Network.

Funded by the Department of Health, the role of the Clinical Research Network is to provide an infrastructure to support clinical research delivery in the NHS.  It does this by funding thousands of research nurses across the country to recruit suitable patients into studies, carry out clinical research activities, and manage the delivery of research studies to time and target.  The spread and scope of its work means that the Clinical Research Network is best placed to provide an accurate picture of the state of clinical research in the NHS in England.

The new statistics, which are based on England-wide NHS study delivery data for the April 2011 - March 2012 year, indicate that clinical research activity in the NHS is strong. and opportunities for patients are increasing.

The figures show that:

  • Research culture in the NHS is expanding:  99% of NHS Trusts offered research opportunities to patients during the year
  • More patients than ever before are taking part in research studies: 595,000 patients were involved last year - a 5% uplift on the previous year
  • The number and spread of life-sciences industry research studies is growing, which means more patients are able to get early access break-through treatments

Commenting on the statistics, NIHR Clinical Research Network chief executive, Dr Jonathan Sheffield, said:  “Our ability to deliver clinical research studies in the NHS efficiently is vital to the economy, and to the development of better treatments for patients.   It is fantastic that so many patients have taken up the opportunity to participate in research, and we'd like to thank every single one of them for helping the NHS to keep improving its service.”

The National Institute for Health Research - Clinical Research Network:  delivering research to make patients, and the NHS, better.

The National Institute for Health Research Clinical Research Network has published new statistics that provide an insight into the current state-of-play for clinical research in the NHS in England.

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NIHR website showcases how research is helping to tackle diabetes

Press Releases   •   Nov 15, 2012 18:56 GMT

2012 is the 90th anniversary of the first use of insulin in humans. To mark this fact, the National Institute for Health Research has launched a new website to showcase the ground-breaking work that top researchers are doing to tackle diabetes.

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New league table reveals how many NHS patients take part in clinical research

Press Releases   •   Jul 25, 2012 19:02 BST

The National Institute for Health Research Clinical Research Network has this week published its annual league table, revealing how many patients are taking part in clinical research across the NHS in England.

 According to consumer polls, 82% of people believe it is very important for NHS Trusts to offer patients the opportunity to take part in clinical research studies if they want to do so. 

 The new league table shows how well the NHS is delivering on that patient expectation by showing the number of clinical research studies carried out by each Trust, and the number of patients who took part in those studies.

 Newcastle upon Tyne Hospitals NHS Foundation Trust currently tops the table for quantity of research (404 studies), an increase of 83 studies on last year’s figure.

 However, as the league table shows, clinical research is not just restricted to the large teaching hospitals.

 Hull and East Yorkshire Hospitals NHS Trust did the most research of the large NHS Trusts in England.  The Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust was the top performer amongst the medium-sized Trusts, while Harrogate and District NHS Foundation Trust took part in most research studies in the small-sized acute Trusts group.

 A growing body of evidence indicates that a research-active culture brings a host of benefits to the NHS, including the development of more effective treatments for patients.

 Dr Jonathan Sheffield is Chief Executive of the NIHR Clinical Research Network - the research delivery arm of the NHS, which provided the data for the league table.  He sees the table as evidence of the growing profile of research amongst doctors and the public, but feels there is still more to do.  He said:

 "Ninety nine per cent of the NHS was involved in research last year, involving almost 600,000 patient volunteers.   That is a fantastic achievement, but we can't sit back and take it for granted. We know from recent polls that patients want the NHS do research, and they want the chance to get involved. Research is core business for the NHS, so we need to keep encouraging hospitals and doctors' surgeries to talk to patients about clinical trials - and encourage patients to raise the subject of research with their doctors, and see what opportunities are open to them.”

 Commenting on the league table results, Professor Dame Sally Davies, Chief Medical Officer and Chief Scientific Adviser, Department of Health, said:

 “This data from the NIHR Clinical Research Network is encouraging and shows us that high quality research is happening, but we need to keep pushing for research to have the profile it deserves with both doctors and their patients."

 To view the research activity league table in full visit: www.crncc.nihr.ac.uk/nhs-performance

 

The National Institute for Health Research - Clinical Research Network:  delivering research to make patients, and the NHS, better.

Consumer polls show NHS patients want the chance to take part in clinical research. Now a new league table from the National Institute for Health Research Clinical Research Network shows how well NHS Trusts across England are meeting that expectation.

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NHS Trusts to receive research "check-up" at NHS Confed

Press Releases   •   Jun 08, 2012 16:53 BST

NHS Trust CEOs are being invited to undergo a clinical research "health-check " for their Trust at this year's NHS Confederation Annual Conference (20-22 June, Manchester Central).

 All NHS Trusts are committed, through the NHS Constitution, to promoting opportunities for patients to take part in clinical research studies.  But until now, no figures have been published to show how individual Trusts are delivering on that duty across the different therapy areas.

 The National Institute for Health Research Clinical Research Network provides support for the delivery clinical trials in the NHS in England, and therefore collects a wide range of data on research performance.

 On Stand B5 at this year's Confed, the NIHR Clinical Research Network will launch a new tool to reveal each individual Trust's "vital statistics" for clinical research.  This includes how many clinical research studies the Trust took part in last year, how many patients it recruited, and how much research is being done across a range of medical conditions.

 The NIHR Clinical Research Network's CEO, Dr Jonathan Sheffield, explains:

 "Research should be core business across all therapy areas in the NHS, but in reality there is a mixed picture.  We know that cancer patients stand a very good opportunity of being offered a place in a clinical study, but it can be more patchy in other areas of medicine.  By showing each NHS Trust a snapshot of their research activity, split by disease area, we can help them to understand where they might want to develop their research offer to patients.  It's about driving a research culture in the NHS, and making sure we give all patients the ability to take part in suitable studies if they want to."

 As well as the stand, the NIHR Clinical Research Network will also be delivering a seminar on the health-check process on Thursday at 1pm, at a special showcase area in the main exhibition hall. 

The National Institute for Health Research - Clinical Research Network:  delivering research to make patients, and the NHS, better.

The NIHR Clinical Research Network is offering all NHS Trusts in England a free "health check", to discover their health and strength when it comes to delivering clinical research.

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Clinical research needs a higher profile in the NHS - new survey shows

Press Releases   •   May 21, 2012 08:00 BST

Research studies are the way that healthcare professionals gather robust evidence about what  works best, in order to improve treatments for patients now and for the future. 

The NHS Constitution states that the NHS will do all it can to ensure that patients are made aware of research opportunities relevant to them.  However, a new survey (conducted by One Poll on behalf of the National Institute for Health Research Clinical Research Network) has found that:

  • Only 21 per cent of people surveyed were aware that carrying out research is a key activity for the NHS, yet...
  • 82 per cent of people surveyed said it is important for the NHS to offer opportunities to take part in healthcare research
  • Less than seven per cent of people surveyed said they would never take part in a clinical research study.

These figures on consumer attitudes are in stark contrast to an earlier survey of healthcare professionals, carried out by Health Service Journal magazine last year, again on behalf of the National Institute for Health Research Clinical Research Network.  In this survey, 61 per cent of healthcare respondents said that research was peripheral in their NHS Trust, with only 38 per cent agreeing that research is embedded in planning and performance at board level.

Commenting on the findings, Dr Jonathan Sheffield, chief executive of the National Institute for Health Research Clinical Research Network, said:

"Research is core business for the NHS, so we need to encourage patients to be more demanding of their doctors and NHS institutions when it comes to offering the chance to take part in research activity.  We also need to do everything we can to encourage a research culture at all levels in the NHS. It is high time that NHS Trust boards put research on their radar."

Whilst the surveys show that more work is required to build the profile of research activity in the NHS, there has been significant progress in recent years.  The National Institute for Health Research Clinical Research Network recruited more than half a million NHS patient volunteers into research studies last year, and this number continues to increase.

The organisation is also sponsoring an award for NHS Trusts who have made the most progress in embracing research at an institutional level.   

Dr Jonathan Sheffield said:

"Research is not just an activity for the big teaching hospitals.  We need district hospitals and GP surgeries to rise to the challenge.  Many have already started to do so, but it's important that it keeps progressing.  With an ageing population, the demands on our health service just continue to grow.  Research is the best way we have to work out the most effective and efficient ways to meet patients needs.  We need to take note of this survey, and keep pushing for research to have the profile it deserves with doctors and their patients."

The National Institute for Health Research Clinical Research Network:  delivering research to make patients, and the NHS, better.

The results of a new survey, published on International Clinical Trials Day (21 May), have shown that most people are not aware that research is a core part of the work of the NHS. The survey raises concerns that patients could be missing out on opportunities to take part in potentially beneficial clinical trials as a result.

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  • Press Contact
  • Communications Director
  • Louise.s.wood@nihr.ac.uk
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About National Institute for Health Research Clinical Research Network

Clinical Research Network

How do we keep improving treatments for NHS patients? Through clinical research...

Clinical research is the way that healthcare professionals gather evidence about "what works", so we can learn how to improve the treatments we give to NHS patients. Carrying out clinical research has always been a core part of the work of the NHS, and is enshrined in the NHS Constitution.

The NIHR Clinical Research Network is funded by the Department of Health to deliver high quality clinical research in the NHS for the benefit of patients. We do this by providing NHS Trusts with funding to employ research nurses, and cover the use of facilities (such x-rays or scans) needed to do research. We also manage the delivery of clinical studies in the NHS - making sure that each study attracts the right numbers of patients in a timely way.

We deal with almost 3,000 research studies, and last year, through our work, more than half a million patients took part in clinical research studies in the NHS.

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  • National Institute for Health Research Clinical Research Network
  • Fairbairn House, 71-75 Clarendon Road, Leeds
  • LS2 9PH