NHS patient data – research resource or ethics minefield?

There has been an interesting development in relation to research data this week, specifically health data, which potentially has far-reaching implications for research ethics.  Addressing the inaugural meeting of the Global Health Policy Summit in London on 1st August, the Prime Minister stated that the government is carrying out a consultation on changing the NHS constitution ‘so that the default setting is for patients’ data to be used for research unless the patient opts out’.  The intention is to harness ‘the incredible data’ held in the NHS, to make the UK a world leader in making anonymised health service data available to researchers, and therefore make the UK ‘the best place in the world to carry out cutting edge research’.

This development could have significant benefits for research and for future healthcare, but seems likely to raise  significant challenges regarding the management of data, data protection and research ethics, issues that already exercise the research community.   The Information Commissioner’s Office has fined healthcare trusts in London and Wales in recent months for breaching data protection rules, for example.  More fundamentally, it will be very interesting to see how this proposed change in policy might address an issue such as informed consent when the default is to be opted-in to consent.  This seems especially problematic given that David Cameron explicitly referred in his speech to ‘long-neglected areas like dementia where the burden of the disease is immense but the obstacles to prevention and cure are equally large’.  Considering the legislative and practical complexities involved already when  establishing consent with such patients, it seems reasonable to assume that this consultation will find research ethics is one of the major obstacle it faces.

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Promoting Physical Activity into Older Age: Call for Research Proposals

This has turned out to be an ageing-themed research week. Earlier this week we had news of the MRC and ESRC’s Extending Working Lives call, now those two funders together with 7 others have released a new call for research on Promoting Physical Activity in Older Age.

At a glance: call facts

  • Applications must be interdisciplinary and must be aligned specifically to this call, rather than Design for Wellbeing or NIHR Public Health Research
  • Older age and later life refers to 60+ years of age
  • The call is focused on prevention of ill health, rather than rehabilitation
  • Up to £1M is available per application (of a total £5.5M pot)
  • Studentships may not be requested as part of the funding
  • Collaborations with users, service providers, stakeholder organisations and government departments are strongly encouraged
  • Applications should include costs of up to £10k for networking activities
  • The deadline is 4pm, Thursday 18th October
  • Applications should be made via Je-S (the Joint Electronic Submission system)
  • If there are large numbers of applications the funders may undertake a triage of proposals before sending them out for external peer review

What are they looking for?

Interdisciplinary proposals which focus on the following three areas:

  • Physiological effects of activity and sedentary behaviour on older people’s health
  • Understanding the determinants of physical activity and sedentary lifestyles in later life
  • Measurement of activity and inactivity in older populations
Further detail on anticipated research focus in each of these areas is available on the MRC call page.

Context

The call is part of the Lifelong Health and Wellbeing theme. Apart from ESRC and MRC, the funders involved are: AHRC, BBSRC, EPSRC, Chief Scientist Office of the Scottish Government, NIHR, Health and Social Care Research and Development Office, Northern Ireland and the National Institute for Social Care and Health Research, Wales. The fact that there have been so many calls about ageing released recently, as well as the fact that most research councils are involved demonstrates the importance that UK government places on research in this area.

Applicants interested in submitting a bid to this call are encouraged to contact RBS at an early stage for advice and proposal support.

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ESRC NIHR Dementia Call Timetable Released

Further to our post earlier this week, ESRC has just release more information about the Dementia initiative it is running in collaboration with NIHR:

ESRC-NIHR Dementia Initiative

The call will address the following areas:

  • Prevention, including public awareness and early presentation
  • Public health of behaviour change, including the role of social interventions in slowing cognitive decline
  • Delivery of interventions in hospitals care homes and carers, including the interface between professionals, lay people and patients, sometimes The Medical Negligence Experts recommend to report any bad treatments there might be regarding hospitals.

If you’re interested in applying you can register to attend a meeting for all potential applicants to be held in mid-late June: Register here.

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Forthcoming call: Design for wellbeing: ageing and mobility in the built environment

ESRC has highlighted a forthcoming joint call with EPSRC and AHRC for evidence-led research into ageing and mobility in the built environment. This will be part of the cross-Council research programme, Lifelong Health and Well-being.

Up to £7M will be available for applications from interdisciplinary consortia. Further details are currently unavailable, but the call is scheduled to be announced in mid-May.

Please contact us if you are a Northumbria member of staff interested in this call.

** UPDATE  16/05/2012** The call has now been released.

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Research collaboration to tackle public health

Northumbria University is involved in a regional consortium which has received funding from NIHR to contribute to public health policy and practice:

Fuse, the Centre for Translational Research in Public Health, is a ‘virtual’ research centre, which brings together staff and students from Northumbria, Durham, Newcastle, Northumbria, Sunderland and Teesside universities.

With responsibility for public health set to switch from the NHS to local authorities, Fuse has been accepted by the National Institute for Health Research (NIHR) as one of only eight member organisations to form a new body in England – the School for Public Health Research (SfPHR).

The Government backed School aims to build closer bonds between researchers and public health policy makers and practitioners at a local level, increase the evidence of what does and doesn’t work in practice, and share this knowledge so that it can influence policy.

Each member organisation will receive funding in the region of £450,000 per year (£2.25m over five years) to undertake priority research for public health in England.

Professor Susan Carr, Associate Director of Fuse, who leads the team of researchers at Northumbria’s School of Health, Community and Education Studies, said: “This will bring exciting opportunities to contribute to public health research and the evidence base for improvement of population health. The aim to build closer bonds between researchers and public health policy makers and practitioners is at the heart of our research approach.

“We look forward with great enthusiasm to contributing to the agenda of the School for Public Health Research.”

Read the full story on the University website.

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EPSRC Healthcare Technology Challenges for Engineering

You may remember a couple of months ago EPSRC previewed a raft of upcoming calls in Healthcare Technology. Now assistive technology, medical imaging and acute treatment technology have all been highlighted as themes within the EPSRC’s latest call for proposals: Healthcare Technology Challenges for Engineering.

The call is in two stages, with the outline expression of interest due by 16.00 on Monday 28th May 2012. This is actually filled in on the call page on EPSRC’s website. These will be assessed in June and the deadline for full proposals will be early August.

The call for proposals [PDF] highlights a focus on multidisciplinary research, new and disruptive engineering solutions involving both novel research and innovative integration of existing technology. Maximisation of user involvement (e.g. clinicians) is also an important factor in this call.

Potential applicants should also note that this call follows on from a range of meetings and workshops, including Healthcare Technologies Futures Forum [PDF], Medical Imaging Technology Working Group [PDF], and Healthcare Portfolio Days between 2009 and 2010. You should familiarise yourself with these documents if you are interested in applying for this call, particularly bearing in mind the EPSRC’s recent request that applicants situate their research in the context of their existing funding portfolio as well as current strategic directions in the healthcare technology area.

There is £10M available for the call and the EPSRC expect projects of up to £1M each, depending on the scale and scope of the research projects. Please contact us for further help and advice with an application.

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Bioinformatics: Where Should I Go?

Which Research Council should I go to if I have a research project in the area of bioinformatics?

It’s a straightforward question, but the answer is not so simple: no fewer than three of the UK research councils have recently published a joint statement clarifying where to send your bioinformatics research proposal.

BBSRC/EPSRC/MRC Joint Statement on Bioinformatics Applications [PDF]

This is timely in light of the recent EPSRC announcement of a reduction in funding for this research area. For BBSRC, the application must be “biologically driven” and three examples are given of the types of project focus which would be acceptable to this Council. EPSRC, meanwhile, is looking for proposals “driven by computer science, and/or mathematics and statistics”, with no more than 50% of the work in the biomedical or biological domains. The MRC are more general and simply state that they will fund all research which seeks to improve human health and well-being.

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Research Ethics Workshop – ‘Consent – do you really need to ask?’

The Association of Research Ethics Committees (AREC) is holding a regional workshop at Durham University on 16th April 2012.  Northumbria University is a member of AREC, so all staff are entitled to attend at the members’ fee of £50.  Please contact Paul Rosen in Research and Business Services for a booking form, or contact  jillianmcguren@arec.org.uk  for more information.

Workshop programme:

‘Consent – do you really need to ask?’

The voluntary consent of the human subject is absolutely essential.                                                   (Nuremberg Code, 1948)

This workshop will consider the concept of informed consent, why it is valued by research ethics committees, how it might be achieved with different participant populations, and whether it is always necessary (or desirable).

It is targeted at researchers from all disciplines and aims to increase understanding of and stimulate discussion around this fundamental ethical principle.

09.30 – 09.50            Registration of delegates and refreshments

09.50 – 10.00            Welcome

Chair:             Mr David Anderson-Ford, immediate past AREC Chair

Professor Tom McLeish, PVC Research, Durham University

10.00 – 10.45            “Consent and permissions in the context of research integrity”

Dr Andrew Rawnsley, University of Teesside

10.45 – 11.30            “Consent in practice – what do REC members look for in Health and Social Care applications?”

Dr Alasdair MacSween, University of Teesside & Chair of County Durham and Tees Valley REC

11.30 – 11.45            Refreshments

11.45 – 12.30            “Tensions between consent and confidentiality when undertaking research with victims of abuse”

Dr Nicole Westmarland and Dr Julia Downes, Durham University

12.30 – 13.00            Lunch and Networking

13.00 – 13.45            “Knowing what you are in for:  issues about informed consent for people with learning difficulties”

Dr Tina Cook, University of Northumbria

13.45 – 14.30            “Consent and minors”

Professor Priscilla Alderson, Institute of Education, University of London

14.30 – 14.45            Refreshments

14.45 – 15.30            “The challenges of seeking informed consent in developing country contexts: some examples”

Professor Bob Simpson, Durham University

15.30 – 16.00            Summary Panel Discussion – “Do you really need to ask?”

An opportunity for delegates and panel members to discuss issues raised over the day.

Chaired by Mr David Anderson-Ford

16.00                          Close

 

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