I also work for the Alzheimer’s Society as a Research Network Volunteer.

Why did you first get involved in medical research?

As the main carer of my parents for several years before they died, with different types of dementia, I acquired a lot of experience both of dementia and of the Oxfordshire NHS, with all its highs and not a few stressful lows. Research seemed a really relevant and positive way to use this often negative experience, and to be honest, as a bonus, I hoped it might help me keep my own OAP brain ticking.

What do you like most about being involved in medical research?

I started life as a lexicographer, then had a career in personnel and project management, so it’s refreshing to delve into a whole new world. It is great that care, and research, are finally becoming more patient-centred and I enjoy playing a small part in that.

Tell us about when you have felt most that your contribution to a medical research project was most valuable and why you felt that was:

I wouldn’t lay claim to any individual achievements – it’s always a team effort.

PPI PulsePatient and Public Involvement Newsletter

Edition 3: Winter 2015

Researchers can get a bit isolated in a very narrow ivory tower, and I try to bring their feet firmly down to that patch of ground beside the patient’s bed. I recently took part in a workshop at the Stroke Association to discuss vascular dementia research priorities. Several eminent professors carrying out biomedical brain research sat round the table with carers

and dementia sufferers. Our priorities were notably different, and by the end of the day the draft strategy had been rewritten. That was a really worthwhile day.

What would be your dream holiday, and who would you go with?

I think I might just have had it – six weeks around Australia, combining family visits, the Barrier Reef and rainforest, palm-fringed beaches, encounters with crocodiles, killer jelly fish and cassowaries, indescribably wonderful brunches and coffee shops in Melbourne….. I could go on. As George C was no longer available, I dragged my husband along.

Meet a PPI ContributorGillian Skyte

It is great that care, and research, are finally becoming more patient-centred and I enjoy playing a small part in that.

In this issue:Osteoarthritis research opportunity – Page 2

Meet a researcher:

Dr Helen Ashdown – Page 4

From the Vice Chancellor Page 5

Young people are contributing to

research – Page 3

The Patients Association – Page 6

Research Update – Page 7

Bits and bobs - Page 8

Tell us about the projects you are currently involved with:

I am a co-applicant, as the patient representative, on a project led by Professor Michael Sharpe from the Department of Psychiatry that is currently seeking funding from the NIHR. This involves testing a new model of Proactive Liaison Psychiatry in acute hospitals – the aim being to improve the outcomes and reduce discharge delays for elderly patients who enter hospital with both medical and psychiatric problems (often dementia).

Gillian Skyte (right) with Dr Helen Ashdown

At the NIHR, patients and the public are at the heart of what they do. They help to ensure that their research is relevant, useful and accessible to everyone. But did you know that they also help them to decide what needs to be researched?

You don’t have to be a doctor, a clinician or an academic to submit a research suggestion to the NIHR. They welcome suggestions from patients, carers and members of the public whose detailed

Patient and Public Involvement Newsletter | Winter 2015

NIHR seeks your views on research

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just leave it blank. What exactly are they looking for? How do you ensure that your suggestion stands the best chance of being researched?

If you need help the NIHR have put together infographics along with detailed examples for each question on the form.

> Submit a suggestion: http://www.nets.nihr.ac.uk/identifying-research/make-a-suggestion > Interesting facts and figures: http://www.nets.nihr.ac.uk/campaigns/help-us-shape-research/facts-and-figures

Osteoarthritisresearch

James Lind Alliance Priority Setting Partnership

Don’t miss your chance to vote for important questions for research in Early Osteoarthritis of Hips and Knees

Who can take part? Patients, carers, and health/social care professionals - If you have, have had, or are caring for someone who has, or had, early stage osteoarthritis (OA), or work as a health or social care professional in this area…..this is your chance to influence what questions future research should answer.

Why should I take the survey? The Early OA of Hip and Knee prioritisation survey will result in the Top Ten questions that future research should answer in respect of (i) surgical treatments for early OA, (ii) Non-surgical treatments, and (iii) other important questions. The questions were collected by an initial survey in Spring 2015, and have been collated and checked to see whether any have already been answered.

How can I take part? The survey will be available from November 26th 2015 at https://www.surveymonkey.com/r/8KDKF58

It should only take about 15 minutes to complete.

For more information, or to request a paper copy, contact the James Lind Alliance Project Manager at the Oxford Biomedical Research Centre - tel/ voicemail 01865 223298, email sandra.regan@ouh.nhs.uk

Funding partners: British Orthopaedic Association, British Association for Surgery of the Knee; British Hip Society.

knowledge of living with conditions and insight into the practicalities of treatment is invaluable to them.

If you have identified something that is missing from the NHS, something they can investigate and test, they want to hear from you. Maybe it’s a treatment that would work better than current practice. Maybe current care needs to be delivered in a different way.

Whatever your idea is, let them know by completing their short suggestion form. Please give as much information as you can, but if you can’t answer a section

The Research Engagement Award is now in its second year and celebrates outstanding exemplars of leadership by Patient Participation Groups in health research in primary care.

The Clinical Research Network has launched the award in partnership with the National Association of Patient Participation (N.A.P.P.). N.A.P.P. is a patient led organisation with a particular interest in patient involvement in primary care, Patient Participation Groups and research. It is hoped that the award will encourage more

Patient and Public Involvement Newsletter | Winter 2015

Does your patient group have what it takes?

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with patients and Patient Participation Groups.

Applicants have until Friday 15 January 2016 to submit their example. The award will be presented on Thursday 25 February 2016.

If you have any queries please contact Roger Steel: roger.steel@nihr.ac.uk

> The application pack and entry form are available online: http://www.crn.nihr.ac.uk/researchengagementaward

Young people arecontributing toresearch

Generation R is a national Young People’s Advisory Group and now consists of five regional groups based in Liverpool, Birmingham, London, Bristol and Nottingham, plus one topic-focused group looking at Mental Health based in London.

Each group is made up of 10-15 members who are aged between 8-19. The groups meet every six weeks either at weekends, in the evenings, or during school holidays and come together for a national meeting once a year. Their views feed into the design and delivery of research in children.

> Find out more: http://generationr.org.uk

Patient Participation Group members to find out about health research and provide leadership to help ensure research is part of the health care choices offered to patients in general practice.

The first cash prize is £400 for the most ‘research active’ and engaged Patient participation Group (or equivalent).

The second prize is £100 and the runner up is awarded a commendation.

They are looking for applications from General Practices, pharmacies and dentists that show innovative approaches to research engagement as a result of work

Patient and Public Involvement Newsletter | Winter 2015

Meet a researcher:Dr Helen Ashdown

Tell us about the research you are currently working on?

Being an academic GP is great because it means I can have very wide-ranging research interests and don’t have to focus just on one area – but I’m particularly interested in infection and lung disease, and how we can better use diagnostic tests in general practice. I’m currently working on a project looking at whether we can use a simple blood test to predict which patients with COPD (chronic obstructive pulmonary disease) will most benefit from having a steroid inhaler to help with their symptoms.

What was your childhood ambition?

As a child I loved animals, and particularly gorillas, and my dream was to set up a gorilla sanctuary in Rwanda along with my sister – we had a business plan and everything!

What do you like most about working at Oxford University?

I really love how varied my working week is – as well as working as GP in the city centre and a researcher in the University, I’m also a tutor in medicine at Somerville College, where I teach medical students. I think the colleges are one of the best things about Oxford University as it’s a fantastic learning environment for students. But also Oxford is an incredibly beautiful city with a vibrant community (both town and gown) and it’s a wonderful place to live and work – I love going for evening runs on Port Meadow in the summer.

Tell us about when you most successfully worked in partnership with patients or public representatives on your research. Why did it work so well?

Several times I’ve been along to the Breathe Easy group in Banbury, which is a British

Lung Foundation support group for people with lung conditions, to explain my ideas and get feedback from the group about their experiences of living with COPD and how the research might affect them. It’s been incredibly useful to have their input into both the original research plan and the practical side of setting up the study. What would be your dream holiday, and who would you go with?

I love mountains and wilderness, and I’m working my way through climbing the Munros (mountains over 3,000 feet in Scotland), but the weather can often be wet and windy – so a holiday to climb some more in perfect conditions would be wonderful. > Get involved: Helen is currently looking for a patient representative to be an advisor on an upcoming study. For details contact Lynne Maddocks (see back page).

The Conversation The University of Oxford has joined the Conversation - A free news website allowing academics to inform public debate.

To date more than 200 Oxford researchers have contributed articles, read by more than 8 million readers. Launched in Australia in 2011 and in the UK in 2013, Articles are free to read and the website is free of advertising – a welcome relief from subscription-only paywalls or being distracted by the visual bombardment of pop-up adverts. Topics include health, science and technology, arts and culture, and politics and society, and the site is curated by journalists with expertise in these areas.

The project was established by journalists frustrated with the increasingly politicised agenda of traditional mass media. Their intention was to inform public debate about the big issues of the day by publishing evidence-based comment pieces written by experts. Concerned that academics were withdrawing from engagement with the media, they wanted to give them a platform where their words would not be twisted to suit a particular narrative. The founders also wanted an antidote to the traditional media’s focus on bad news and drama.

> Find out more: http://theconversation.com/uk

Good news at University of Oxford In addition to being ranked first in the UK for research, the University was ranked as the world’s best in both Life Sciences, and Clinical, Pre-Clinical and Health subjects in the Times Higher Education World University Rankings.

The University has appointed Professor Sarah Whatmore as the University’s Academic Champion for Public Engagement with Research. The University has an exciting role to play in public engagement and it will be great to see where Professor Whatmore can take the lead on this.

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Patient and Public Involvement Newsletter | Winter 2015

From theVice Chancellor

Some (edited) words from the departing Vice Chancellor of Oxford University, Andrew Hamilton.

“Over the past decade, Oxford’s research income has grown by 8–9% a year. Last year, we secured a total of £478 million for research projects in an intensely competitive environment, from companies, from charities and from government. That puts us on a par with Yale and Harvard and more than £100 million ahead of the chasing pack in the UK. We can sometimes forget the scale of this enterprise, driven by the hard work and imagination of so many outstanding faculty and students and generating an annual turnover of the University alone of nearly £1.3 billion.

In May, we announced the Oxford Thinking campaign had reached a total of £2 billion in gifts, achieved through the fastest rate of fundraising in British higher education.

Once again, the number is less arresting than the stories behind it. Stories like that of Hong Kong entrepreneur Sir Ka-shing Li, who through his charitable foundations has pledged £20 million to help establish the Li Ka Shing Centre for Health Information and Discovery. This centre, the first of its kind in the world, will house more than 600 scientists exploiting big data research in many fields of medicine, with the potential to transform the understanding, treatment and management of disease. Or stories like that of interior designer Mica Ertegun, who established the Mica and Ahmet Ertegun Graduate Scholarship Programme in the Humanities, guaranteeing at least 35 such scholarships at any one time in fields as diverse as literature, history, music and archaeology.

We have now seen the first cohorts from the Moritz–Heyman scholarship fund pass out of their college gates. Every year, up to 160 new students from the UK’s

lowest-income families will receive, on average, a reduction of £3,000 from their tuition fees and a further £4,500 bursary towards living costs. We say, repeatedly, that financial circumstance is no barrier to an Oxford education – and we mean it.

More recently, in my six years, Oxford research has generated 31 new spinout companies. That rate, more or less 5 new ventures every year, is the highest in the UK. Last autumn I visited a mosquito breeding plant in Brazil. The plant is the creation of Oxitec, a spin-out exploiting genetic modification techniques developed in the Department of Zoology. The Oxitec GM insects are incapable of reproducing effectively. The idea is that if they are introduced into the wild, the native disease-bearing mosquito population will collapse. There are enormous implications for the control of a range of diseases, with dengue fever perhaps the most advanced.“

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NHS Annual General Meeting Q&As now available

This year’s NHS England Annual General Meeting (AGM) took place on 21 October, one year on from the launch of the Five Year Forward View.

Senior NHS leaders from across the country took part in open panel discussions around the Five Year Forward View and five priority health areas – mental health, cancer, obesity, diabetes and people with learning disabilities. When the floor was opened to attendees, a number of questions were generated. The complete set of questions and answers is now available to read on the NHS England website. You can also watch the video of the AGM.

> Report Q&As: http://bit.ly/1OzL3PA > AGM video: http://bit.ly/1O7O6tJ

Can you help the National Institute for Health Research?

The new National Institute for Health Research (NIHR) Dissemination Centre makes health research evidence easy to reach. It regularly publishes ‘Signals’, which are short summaries of recent health research, available on the NIHR free-access portal called Discover.

Each week the NIHR asks a group of patients and carers to read and rate research summaries in an area of

interest to inform which ones will make the most useful Signals. Patients and carers are offered £5 for each rating they complete. Sign up to take part by completing a short form and provide your profile details. > Sign-up to take part:

http://www.dc.nihr.ac.uk/get- involved/registration-form

Patient and Public Involvement Newsletter | Autumn 2015

Summary of NIHR Annual Reports

The NIHR Central Commissioning Facility (CCF) manages a number of initiatives. Every year, each initiative produces a progress report, and within this report there is a Patient and Public Involvement and Engagement (PPIE) section that asks for a brief summary of progress to date in implementing PPIE strategies.

For 2014-15 for the first time, CCF has made the PPIE sections of annual reports publicly available. The main aim in doing this is to support and promote the sharing of knowledge, learning and good practice across the NIHR and beyond.

> Find out more: www.nihr.ac.uk/get-involved/ccf-ppie-reports.htm

Patient and Public Involvement Newsletter | Winter 2015

The Patients Association

Do you know about the Patients Association?

The Patients Association’s motto is ‘Listening to Patients, Speaking up for Change’ and is the basis on which they campaign. They use the feedback from their Helpline to capture thousands of accounts each year from patients, carers, family members and friends about peoples experiences of the health and social care service. In addition, the Helpline provides valuable signposting and information for patients and supports them as they

navigate through the healthcare services.

How do they help?

In addition to their helpline they gather the opinions of patients by carrying out surveys, focus groups, listening events and obtaining feedback from their Ambassador network. They use the concerns raised to campaign to various stakeholders such as parliamentarians, the media, civil servants, other charities and professional bodies

If you would like to find out more you can receive a copy of their weekly news round

up by email, and the ability to help shape the work of the Patients Association by taking part in their regular surveys on issues affecting patients in the UK.

> Find out more: http://www.patients-association.org.uk

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Reports are available from the following groups:

• Biomedical Research Centres and Biomedical Research Units.

• Collaborations for Leadership in Applied Health Research and Care.

• Clinical Research Facilities for Experimental Medicine.

• Diagnostic Evidence Co-operatives.

• Healthcare Technology Co-operatives.

• Patient Safety Translational Research Centres.

• Health Protection Research Units.

• Research Schools.

They welcome feedback on these reports. For example, it would be helpful to know who is reading them, whether readers find them informative and useful, or not and what could improve them. Please email your comments to: ccfppi@nihr.ac.uk or contact the CCF PPI team

> If you are a member of the public and would prefer a paper copy, please contact the CCF PPI team: http://www.nihr.ac.uk/get-involved/contact-us.htm

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Patient and Public Involvement Newsletter | Winter 2015

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Why do GPs make errors? Research published in the British Journal of General Practice has explored GP’s mistakes in diagnosis, and how these can be avoided. The study, from Oxford University’s Nuffield Department of Primary Care Health Sciences, used interviews with GPs to find common themes in cases where a misdiagnosis had occurred or was narrowly avoided. The team were interested in the approaches to clinical decision making that were implicated in diagnostic errors and also considered the implications of these findings for GP training.

The Oxford team identified several important themes: the limitations of pattern recognition, the importance of considering all potentially serious conditions using a ‘restricted rule out approach’ and difficulties in using ‘red flag’ symptoms to rule out serious conditions. Issues around dealing with diagnostic uncertainty and knowing how to respond to a ‘sense of unease’ about a particular patient were also discussed. The authors conclude that medical education needs more emphasis on the decision making process and how to identify and avoid diagnostic errors, while GP trainees should be given the opportunity to learn from the errors of others. Meanwhile, they say, more research on how and why errors are made can help to improve medical practice. > Find out more: http://bit.ly/1NYeINL

Mixed support available to women after traumatic birth Primary care teams should be made aware if a woman has had a traumatic birth so they can offer the support these women may need, finds a qualitative study into the long-term impact on women and

Future work will include a longer-term follow-up study of the outcomes of PPI on research findings and impact on services and clinical practice. > Find out more: http://bit.ly/1m1qLmZ £1.8m funding for probiotics and infection study Can daily probiotic supplements prevent infections and reduce the need for probiotics in care home residents? Primary care researchers at the Universities of Oxford and Cardiff are now due to commence a £1.8m study to test just this, in a bid to cut antibiotic use in this high-risk group. The study is funded by the National Institute for Health Research. Infections are the most common reason for care home residents to be hospitalised, and previous research shows they are the biggest user group for antibiotics - which puts them at a significant risk of developing antibiotic drug resistance. This resistance can spread to hospitals and the community - reducing the effectiveness of these important drugs to fight common infections.

The researchers will recruit 330 care home residents in Cardiff and Oxford and provide them with daily supplements of Lactobacillus rhamnosus, and Bifidobacterium animalis subsp. lactis, versus a placebo, over a period of 12 months to assess the total number of days on antibiotics for common infectious diseases.

> Find out more: http://bit.ly/1SCRWyA

Research Update

their families of a life-threatening illness in pregnancy and childbirth. The study, published in the British Journal of General Practice, found that while physical recovery sometimes taking a long time, women were often not able to look after their babies as they wished in the early days.

Some women reported experiencing anxiety, panic attacks, flashbacks and post-traumatic stress disorder. Long-lasting emotional effects after discharge from hospital included fears about future fertility and pregnancies, social isolation and lack of support. The research was conducted by a team from the Nuffield Department of Primary Care Health Sciences. > Find out more: http://bit.ly/1LnrPXa

What makes for effective PPI? There are six factors that contribute to effective patient and public involvement (PPI) in research. Research conducted by a group of researchers from the Universities of Hertfordshire, Kent, East Anglia, and Warwick for the NIHR concluded effective PPI is characterised by:

• a shared understanding of moral and methodological purposes of PPI,

• a key individual co-ordinating PPI

• ensuring diversity,

• a research team positive about PPI input and fully engaged with it,

• long-term and well-established relationships between PPI reps and researchers,

• proactive and systematic evaluation of PPI in research.

Contact Us

Lynne Madocks Coordinator of Patient & Public Involvement* Tel: +44 (0)1865 617198 Email: lynne.maddocks@phc.ox.ac.uk

www.phc.ox.ac.uk | @OxPrimaryCarewww.clahrc-oxford.nihr.ac.uk | @CLAHRC_Ox

Nuffield Department of Primary Care Health Sciences University of Oxford, New Radcliffe House, Radcliffe Observatory Quarter, Woodstock Road, Oxford, OX2 6GG

Please contact us if you could help promote our research with this postcard

* for the University of Oxford’s Nuffield Department of Primary Care Health Sciences and the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) Oxford at Oxford Health NHS Foundation Trust.

Bits and bobs

Did you know that it is now a requirement for all senior NHS England and Department of Health officials to spend a month a year on the care frontline?

Whether in NHS settings, social care, or related services . The directive is a response to the Francis inquiry’s finding that, to avoid any repeat of the mid-Staffordshire hospitals scandal, health department civil servants must have a better understanding of the daily pressures faced by care workers, patients and service users.

Announcing the directive in May, health secretary Jeremy Hunt said: “For the department’s leaders to hammer home the importance of putting patients first, they need to see for themselves what that actually means.”

Attend a health conference

> DIA EuroMeeting (Global forum for therapeutic innovation and regulatory science)

https://www2.diaglobal.org/en-US/Flagship-Meetings/DIA-Annual-Meeting.aspx

A number of patient advocates can attend by applying for a fellowship. Some receive free registration and travel reimbursement; the rest receive free registration only. Patient speakers are fully funded for registration and travel.

> European Haematology association conference

http://www.ehaweb.org/congress-and-events/21st-congress/key-information-3/

Training and courses for the public NHS England are offering places on training courses for members of the public.

Apply online: http://bit.ly/1lVd09w Submit your application to Alice Williams - alice.williams2@nhs.net

And finally...

Thank you to everyone who responded to the recent survey of views on this newsletter. We had 29 responses and of these 18 thought it was very interesting and 25 said that they want to get it in the future.

The feedback was received too late to have a significant impact on the content of this edition but it will inform the next, including more information about our blog which 13 respondents were happy to help produce. The most popular request for content were research updates, PPI role opportunities and case studies where PPI made a difference.

“I found the newsletter written in easily understood language, the breadth of subject matter was excellent and lots of stuff new to me.”

“Interesting to find out what’s going on. Have applied for vacancies listed in it.”

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This is a little story about four people named Everybody, Somebody, Anybody, and Nobody. There was an important job to be done and Everybody was sure that Somebody would do it. Anybody could have done it, but Nobody did it.Somebody got angry about that because it was Everybody’s job. Everybody thought that Anybody could do it, but Nobody real-ized that Everybody wouldn’t do it. It ended up that Everybody blamed Somebody when Nobody did what Anybody could have done.