NIHR Devices for Dignity June Newsletter @Devices4Dignity

Delivering innovative technology solutions to support people with long-term conditions, preserving their dignity and independence

Newsletter June 2016

D4D – recognised for ‘Outstanding Practice’

D4D is very pleased to have been highlighted as an example of Outstanding Practice at our host Trust, Sheffield Teaching Hospitals NHS FT. In June 2016 the report from the CQC’s recent inspection of the Trust was released; you can read about us and other areas of Outstanding Practice in the summary, here.  Additionally, it was reported that at the Trust there is a ‘culture of innovation and improvement [evident] throughout all levels of the organisation’.

Congratulations to D4D, and everyone that we work with as part of our network of patients and experts.

Innovation funding available for child health projects

D4D Junior are delighted to be partners in a new Small Business Research Initiative (SBRI) healthcare competition to find innovative new products and services in child health. This call has been supported by the TITCH network, and is in partnership with the Academic Health Science Networks (AHSNs)

Applications are invited from industry partners and their collaborators to support self-care and independence in children with long-term conditions in two key areas:
•           Assisting or restoring function (limb rehabilitation)
•           Self-care and remote monitoring

The deadline for applications is noon on 28 July 2016. If you are interested in applying you can find further information here.

Proof of Concept funding available –
Next Generation Technologies for Incontinence

Do you need funding for a proof of concept project?
Call now open: up to £50k for

Next Generation Technologies for Incontinence
D4D are partners in the IMPRESSplus Network, who have announced this latest funding call. The call’s focus is on early stage research that has the potential to bring significant changes to continence care rather than incremental improvements to existing technology. Up to £50k is available to support staff and consumables costs for 6 month projects with a full-time post-doctoral researcher, or equivalent.

The deadline for applications is midnight on 1 October 2016. 

You can find more information about the call here.

Healthcab shortlisted for Patient Safety Award 2016

365response, the company behind Healthcab, have been shortlisted for the Best Emerging Technology and IT Award at the Patient Safety Awards 2016.

“We love this innovative company – over the past two years we have worked with them to develop Healthcab, a technology solution that puts renal dialysis patients in control of their healthcare journeys. Healthcab is also proving a hit with transport providers as the technology aligns so well with their needs.” – Dr Nicola Heron, D4D Programme Director

Fingers crossed for Healthcab!

Customised face masks to help children breathe

D4D Junior is a partner in a Non-Invasive Ventilation (NIV) project, which is now active, having received funding from the NIHR i4i Long-term Conditions in Children and Young People themed call.

NIV provides breathing support for people with breathing difficulties, and evidence shows that it can improve both quality of life and life expectancy. Our project is focused around the development of customised non-invasive ventilation interfaces (face masks) for children for whom current commercial masks are unavailable or unsuitable, with the aim of improving ventilation therapies and reducing complications.

Further information is available here.

What do patients think of the Head Up collar?

Over 60 patients have now been recruited to the clinical evaluation of the Sheffield Support Snood, a device for patients with a diagnosis of neck muscle weakness as a result of neurological conditions. We’re delighted with the feedback we’ve received so far. Some patients have shared their experiences:

Liz has reviewed the Snood as part of her blog, here (blog post 6), in which she describes how she uses the snood, and other aspects of her day-to-day life with motor neurone disease (MND).

Phillip surprised us with a short video of his thoughts about the Snood, which you can watch here.

Thank you to Liz and Phillip, and to everyone else who continues to be so actively involved with developing this device. You can also follow our progress on our twitter account, @HeadUp_Bruno, where you can find the latest patient and project updates and experiences.

Dr Moon’s Inventing Room 

Children, parents and healthcare professionals visited Dr Moon’s Inventing Room, a unique Children’s Health Innovation Day, in Leeds on Saturday 25 June 2016. The event offered children and their parents the opportunity to discuss with healthcare professionals, academics, designers and industry leaders the challenges that children and young people have. The event generated a number of ideas from children and families.

“This has been a really exciting event that has brought together lots of people from different areas, especially the families. It puts a completely different slant on how we can address the problems faced by children with long-term conditions. Our challenge is now to take these ideas and get the right people involved to create the technology needed to deliver them.” – Paul Dimitri, Paediatric Theme Lead for D4D Junior/TITCH.

Dr Moon’s Inventing Room was organised by D4D Junior/TITCH (Technology Innovation Transforming Child Health) in partnership with the Yorkshire and Humber Academic Health Science Network (AHSN).

Our Independence and Dignity Survey was so successful that we have re-opened it.  If you have or had a long-term condition, or care for someone that does, tell us about it – please complete our survey, here.

If you have identified an unmet clinical need, please tell us about it through our Innovation Portal, here.

You can also find some of our reports and films here:

• D4D Annual Report 2014-15
• My Dignity Means: A Patient-led Event – the report
• D4D Youtube Channel

Highlights from @CLAHRC_GM

Welcome to the NIHR CLAHRC Greater Manchester Highlights

Part of what CLAHRC Greater Manchester does is make a difference in practice to people and, given our range of programme and projects, these are people with a wide range of conditions, receiving care in different places and at different stages of their lives. We’ve recently published a number of case studies on our website – to show how research really can make a difference – which I encourage you to look at.

If you’re interested in the wider network of 13 CLAHRCs across England, a database of all projects has just been launched; you can search the database by CLAHRC or by health category. Many of our projects are classified as ‘generic health relevance’ but we’re hoping to develop this more in future to make the categorisation more useful. All our projects link back through to our own website, but the national database will be of interest to those of you wondering what others are up to.

The new clahrcprojects.co.uk website showcases work from all 13 CLAHRCs in one place.

We have a great team of people working on CLAHRC projects, including the patients and carers who are part of our work. We’ve recently published blogs from some of the stroke carers we’re working with which are well worth reading – just some of the things we were involved in as part of stroke awareness month (“make may purple for stroke”). And we were delighted that, in the same month, the lead of our stroke programme, Audrey Bowen, was promoted to professor.

As always, please do follow up with us on items in this newsletter that are of interest to you – we are always pleased to connect with new people.

Making a difference to care in Greater Manchester and beyond
Our case studies show how we’ve made a difference to care for patients with a huge variety of different conditions: from people with chronic kidney disease or mental health issues, to people at risk of developing diabetes or who have survived a stroke. View our recent case studies.

Spreading our impact through blogs
Our recent blogs have discussed what it’s like being part of our REMORA app development team, what it means to be a nurse working in health research and how we’re working to prevent acute kidney injury, as well as three fantastic blogs in May from stroke carers to celebrate stroke awareness month. Read all of the blogs on our website.

New service for patients with chronic widespread pain
Patients with chronic widespread pain and fibromyalgia can now access individually tailored programmes of talking therapy. This project aims to improve care by offering access to telephone-delivered talking therapies as part of the management of chronic musculoskeletal pain. Read more.

Developing an app for arthritis patients
We’re delighted to announce that, following a development period which included co-development with patients, we’re now up and running with the first version of our mobile phone app for the REMORA (REmote MOnitoring of Rheumatoid Arthritis) study. Read more.

Room for improvement in management of people with chronic kidney disease
Our most recent evaluation report shows that there’s still progress to be made in caring for people with chronic kidney disease (CKD), in particular around finding patients who remain undiagnosed, increasing the quality and accuracy of proteinuria diagnoses and controlling blood pressure for more patients with CKD. If you’ve got ideas about how we might take this work forward, please get in touch. Read more.

Our newest project aims to improve care for kidney injury patients
Our latest work in Bury will implement and evaluate novel interventions to manage patients who have had an episode of care complicated by acute kidney injury. Read more.

Supporting end-of-life family carers
We recently worked with Marie Curie to adapt an evidence-based carer assessment tool to a hospital setting so that patients can be discharged from hospital at the end of their lives. As the project has now closed, we’re able to share some of our general findings before final results are published later this year. Read more.

New e-book is first in-depth guide to evaluating healthcare system innovations
Our director and one of our leadership team are some of the authors of a new e-book which analyses challenges faced by healthcare providers and academics in evaluating system-level innovations in healthcare services in an evolving landscape. Whilst it isn’t a ‘how-to’ guide to evaluation, it does cover the major research approaches and challenges and will be of interest to some of you. Read more.

Mapping research capacity activities in the CLAHRC communities
A new report from all 13 CLAHRCs details services and initiatives useful to anyone interested in developing research capacity in nurses, midwives and allied health professionals. Read more.

Partner event: Fairer futures? Reshaping care for older people, followed by a drinks reception at the Whitworth Art Gallery
12 September 2016, Manchester 

This symposium will bring together a broad audience of people interested in the care of older people, including academics from the Alliance Manchester Business School Health Services Research Centre (HSRC), the Manchester Institute for Collaborative Research on Ageing and the Fairness at Work Research Centre, as well as older people, policy makers and practitioners. The event will consider issues around how we can do better for older people.

The day symposium will be followed by a drinks reception at the Whitworth Art Gallery, where the quality of work being produced by the HSRC will be showcased. If you are unable to attend the day programme please feel welcome to visit the Whitworth for the reception.

Read more or email hsrc@manchester.ac.uk to book your place.

Creating a new health care improvement research institute @healthfdn

The Health Foundation, an independent charity working to improve the quality of health and health care in the UK, is searching for a leading UK university to establish and run a new institute for developing and applying research to improve health services.

We want to build on our investment in this field over the past five years by creating a thriving academic centre that, with partners, develops knowledge about how to improve services and translates this into demonstrable improvements in practice for patients.

We are looking for a university with a reputation for first class research into improving health services, and a strong record of collaboratively catalysing change in front line care in partnership with the NHS.

The Health Foundation will provide in the region of £30 million in funding over a period of 10 years to support establishment and development of the institute.

Applicants will need to identify a credible leader for the institute with an exemplary record in the study and application of improvement research, and demonstrate how they will work creatively and innovatively with other organisations, including but not limited to the NHS.

http://www.health.org.uk/creating-new-improvement-research-institute-0

The deadline to submit an expression of interest is midday, Wednesday 15 July 2016.

Building collaborative relationships among professionals, patients, carers & communities @TheKingsfund

 

Patients as partners, which stems from an evolving body of the King’s Fund’s work focused on exploring and supporting shared leadership.

The guide suggests five approaches to developing an effective relationship:

• find your collaborative partner: this, together with identifying funding and a real task to work on, marks the first important stage of beginning a collaborative relationship
• invest in developing leadership and collaborative relationships
• make time for learning: set aside time for reflection, record learning and share that learning with peers and those you hope to influence
• go where the energy is: sometimes this means working under the radar for a while until you are ready to share your results, your approach and your learning
• embed collaborative activity at all levels in your system or organisation.

To download your copy of the report, visit The King’s Fund website today.

 

NHS England ‘closing’ Care.data

NHS England is closing the much-criticised Care.data programme, ministers have announced.

The move follows publication today of Dame Fiona Caldicott’s review of data security, consent and opt-outs, which called on ministers to “consider” the programme’s future.<https://www.gov.uk/government/publications/review-of-data-security-consent-and-opt-outs>

As exclusively revealed by HSJ earlier today<http://www.hsj.co.uk/topics/technology-and-innovation/breaking-government-advised-to-keep-tight-controls-on-ccg-data-access/7006134.article?blocktitle=News&contentID=15303>, the review recommended that patients should be able to opt out of their identifiable data being used by commissioners, other than for invoice validation and other limited circumstances.

A statement published today by life sciences minister George Freeman said<https://www.gov.uk/government/speeches/review-of-health-and-care-data-security-and-consent>: “In light of Dame Fiona’s recommendations, NHS England has taken the decision to close the Care.data programme.

”However, the government and the health and care system remain absolutely committed to realising the benefits of sharing information, as an essential part of improving outcomes for patients.

“Therefore this work will now be taken forward by the National Information Board, in close collaboration with the primary care community, in order to retain public confidence and to drive better care for patients.”

Care.data was put on pause after it was accepted that sufficient care had not been taken over patients’ consent for having their data shared<http://www.hsj.co.uk/home/patients-uninformed-on-data-plan/5067719.article>.

The flagship NHS England programme was launched in 2013 and was an ambitious project to join up patients’ data across the different parts of the health and social care system. The first stages involved linking GP records with hospital episodes statistics data.

But it sparked a furious response from patient groups, privacy campaigners and GPs. They said patients’ data was being shared without legitimate consent.<http://www.hsj.co.uk/home/patients-uninformed-on-data-plan/5067719.article>

As of May 2016, up to 1.5 million people had registered to opt out of the programme,<http://www.hsj.co.uk/topics/technology-and-innovation/up-to-15m-opt-out-of-caredata-new-data-suggests/7004861.article> requesting their records not leave their GP practices except for direct care or in “exceptional circumstances”.

Dame Fiona’s recommendation on Care.data was one of 20 in the report, which set out proposals for the development of a new consent model to allow patients to opt out of their data being shared for purposes other than direct patient care.

While there is a model in place, it is largely viewed as confusing for patients, and health secretary Jeremy Hunt commissioned Dame Fiona to draw up new plans as part of the review.

She told journalists today that how existing optouts were dealt with was not addressed in her report and would require further work. The new model of consent should also be subject to a public consultation to ensure patients understand it, the report says.

The report says: “This is a report about trust. It addresses the question of what more can be done to build trust in how the NHS and social care services look after people’s confidential data and use it appropriately.

“The Department of Health should conduct a full and comprehensive formal public consultation on the proposed standards and opt-out model. Alongside this consultation, the opt-out questions should be fully tested with the public and professionals.”

Other recommendations include:

*   Leadership of every organisation should demonstrate clear ownership and responsibility for data security, just as it does for clinical and financial management and accountability

*   NHS England should change its standard financial contracts to require organisations to take account of the data security standards as set out in the report

*   The Care Quality Commission should amend its inspection framework to include performance against the new data security standards

*   “Harsher sanctions” should be put in place for where malicious or intentional data security breaches occur

*   Ministers should also consider introducing stronger sanctions to protect anonymised data. This should include criminal penalties for deliberate and negligent re-identification of individuals

*   The case for data sharing still needs to be made to the public, and all health, social care, research and public organisations should share responsibility for making that case.

The report has been welcomed across the sector, including from commissioners, who have long cited their inability to get hold of patient confidential data as a major block to intelligent commissioning.

Graham Jackson, co-chair of NHS Clinical Commissioners, said: “The recommendations in the Caldicott Report look to address some of the critical areas surrounding access to data, and we look forward to working with the DH, NHS England and others on the next steps to ensure that the right people who need access to patient records are able to do so responsibly to commission high quality care for their populations; as Dame Fiona says in her report: ”The duty to share information can be as important as the duty to protect patient confidentiality’.”

The DH has today “provisionally accepted” the recommendations and confirmed there will be a public consultation and further testing of the recommendations put forward.