Monday, 5 December 2016

"Education is not the filling of a pail, but rather the lighting of a fire." W B Yeats

Galway is a beautiful, bustling, bracing city on the West Coast of Ireland. It is full of laughter, music and poetry. Lovely people, great food and there might have been some drink! It is easy to see why it is to become European Capital of Culture in 2020. Follow @Galway2020

The Health Research Board of Ireland (HRB) has produced an ambitious Strategy 2016-2020: Research, Evidence, Action. The document states that "people are at the centre of health research. Over the next five years, we will develop initiatives aimed at strengthening the involvement of patients and the public in health research in Ireland".

I had the pleasure of visiting Galway last week to give a talk at the National University of Ireland - Galway as a direct result of my involvement with the PRioRiTy Study (Prioritising Recruitment in Randomised Control Trials) a joint NIHR James Lind Alliance and HRB Trials Methodology Research Network initiative.

It was great to meet so many researchers from medicine, engineering and primary care.

The HRB began by its plans by inviting people to comment on how the public might get involved and the survey results clearly show how much is already taking place.

The HRB has recently set up the Ignite Awards call designed to build capacity in Institutions that will help provide researchers with the support they need to involve patients and the public in their research and convey this in their grant applications. 

The Medical Research Charities Group, Ireland held an event about Patient and Public Involvement in Research in September 2016 and have produced an excellent Conference report.  The Conference presentations can be found hereYou can follow @MRCGie 

IPPOSI - The Irish Platform for Patient Organisations, Science and Industry - is a patient-led organisation that works with patients, government, industry, science and academia to put patients at the heart of policy and medicines development. They have also produced some very helpful booklets about Clinical Research

You can follow @IPPOSI and @DerickOMisteal

Marie Ennis-O'Connor, a patient advocate social media consultant, who trained in Dublin has produced a great set of slides which describe the value of working together in a shared endeavour of co-design. The slides can be found on this Slide Share and you can follow Marie @JBBC

My talk in Galway can be found using the hashtag #PPIinResearch but it had 6 main points

1. START WITH A PURPOSE - Let Form follow Function - It is much better to start with a clear notion of why and what you want to do. e.g. A) Research cycle (See handy RDS booklet); B) Research Processes (Funding bodies, Oversight Committees) C) Organisational Change (Experience talks, sounding boards, focus groups) or D) Co-facilitators for a focus group, co-applicants and partners in the protocol. Each may require different people with different skills needed

2. REACH OUT - A) Diversity of age, background, culture to widen the involvement to the seldom heard.  B) Consider online, social media, etc; C) Charities taking more pragmatic approach , closer to patients, influencing their practices and priorities. Alberta Cancer Foundation - segmented relationship, Cancer Research UK model of right people for right role, Parkinson's UK approach (See note above for Medical Research Charities Group, Ireland). Value in UK comes from PPI cross fertilisation of ideas, people, practices, safe place and a learning set approach

3. THINK IMPACT - what difference is this intended to achieve. Impact is coming up the Agenda. Impact: Research + People. Also easier and more possible when you allow form to follow function. Plan for Impact at beginning. Exploring Impact, Parkinson's 

4. SUPPORT PEOPLE - your researchers and their research to do this well - provide training that is separate and combines with patients; how you could help support groups and individuals by offering the advice, the skills and knowledge. Leadership, learning and development - MOOC 

5. LOOK AROUND - Other countries following and leap frogging - Europe (patient organisations), Australia (citizenship), America (advocacy), Canada (Charity core value, segmentation of patient experience), Denmark (open access information), Japan, etc. (see below). We became fixed rather than fluid.

6. INVOLVEMENT IS NOT SCIENCE - Nor an industry. It does not need to be complicated. Develop a change culture and build a critical mass; the only way of working is common endeavour, shared learning and knowledge transfer.

A summary of Patient & Public Involvement policy in UK can be found here.

It is also important to remember that Ireland has a long history which includes the diaspora of intellect, skill and labour to all parts of the world but also those forced to leave specifically during the Famine.  The monument at Galway marks a poignant reminder.

Tuesday, 1 November 2016

More Progress at Parkinson's UK

More Progress at Parkinson's UK

Parkinson's UK have now published a great IMPACT REPORT on Patient & Public Involvement

It provides superb examples of the 'Difference made to Research' and the Difference made to People'  

I wrote an earlier blog post about the changes that are taking place in Charities in September 2015. 

The progress since then has been great and Parkinson's are showing the way by having this report written. 

You can watch a short film clip and read more about the whole project here.

There is also a great 'two page' highlight leaflet which captures the key points.

All the researchers who involved patients would do so again!

Too often, these reports talk about the 'input' - the numbers of people who have helped but this is clearly about the difference that has been made.

Of course, you can't just measure output unless you have helped people understand what involving patients, carers and the public is all about.

Parkinson's UK produced this deceptively simple - A resource for researchers 

It can be applied to virtually any area of health and social care research.

Thanks to Isabelle Abbey-Vital, Research Involvement Officer at Parkinson's UK for bringing this report to my attention. Izzy recently gave a presentation to the Leaders Forum for Patient, Public Involvement and Engagement at NIHR Clinical Research Network

The Impact Report is written by Kristina Staley whose work on Exploring Impact for INVOLVE is well known

Wednesday, 5 October 2016

What is happening in the East Midlands

Today, 6th October 2016, I have been invited to talk at the National Institute for Health Research (NIHR) at 10 conference celebrating what is happening in the East Midlands #NIHR10EM - a great example of One NIHR. 

Dr Adele Horobin, the Patient and Public Involvement and Engagement Manager and Goiz-Eder Aspe Juaristi, Project Manager, kindly sent me some information about how patients and the public are making a difference in the East Midlands and in the wider world.

It seems such great stuff that I thought I would post some of the links.

Read about how a James Lind Alliance - Priority Setting Partnership (PSP) in mild/moderate hearing loss was coordinated.  With very significant public and hearing charity input, this PSP will influence the course of future research into mild/moderate hearing loss. 

Working with a lay co-applicant, they also recently won a grant from the British Tinnitus Association that will fund additional PPI work into developing a Core Outcome Set (COS) for tinnitus which will be part of the Comet Initiative.

You can read about and watch how a multi-media educational programme was developed for first-time hearing aid users. Called C2Hear, this programme is now freely available online, on You Tube. C2Hear was developed in partnership with members of the public who have hearing loss and use hearing aids. C2Hear is also being promoted through our audiology services.

Tatty Scott (Leicester cardio PPI/E Manager) and Rebecca Pritchard (Leicester-Loughborough Diet Lifestyle and Physical Activity Biomedical Research Unit (BRU) Patient and Public Involvement (PPI) Manager) have both been active in beating SCAD (You will have to click on the links to find out more)... 

BEAT Scad UK – the group that campaigned for the research – has its second annual conference taking place in Leicester in November. Not only that, but the group has achieved charity status; quite an inspiration.

It is also worth noting the SHAREBank which means that those in involvement and engagement have the opportunity to meet and exchange ideas and resources.

Also a quick mention for the great Public Face which provides regular updates for the public about what is happening.  I love receiving this in my inbox.

Well Done, everyone and thank you Beth Moss, CRN Chief Operating Officer for the invitation! 

Congratulations on the awards for the Biomedical Research Centres in the East Midlands.

Tuesday, 12 July 2016

The Disruptive Patient (part 2): Disruption in Action

I should clarify that by 'disruption' I mean a change to the way things are done. Disruption  bringing new ideas to the table and turning things on their head.


Or, as mhabitat say: 

            discover - dream - design. 

I am taking part in a Digital Discovery Lab facilitated by habitat today and will be tweeting @DerekCStewart with #myresearchlearning and look out for @KarenInns1

Social Media has completely disrupted the way in which people find out about their health and research. These communicate across countries and transforms the means of communicating with those with similar conditions. 

We are seeing the emergence of completely new groups using the breadth of social media platforms

We don't have to wait until the first Saturday of the month to meet. We can chat at virtually any time of day or night. 

Even many of the traditional Patient Self-Help and Support Groups are also using social media as a means of keeping in touch with their membership and promote the help they offer.

Recently, I came across  Marie Ennis-O'Connor, who set up the Patient Empowerment Foundation. Marie has compiled a list of over 400 Patient Advocates on Twitter. Follow Marie @JBBC 

Organisations such as PatientsLikeMe and providing platforms to enable patients to talk to each other, raise topics of interest and learn. 

Roz Davies recently gave a talk at the Royal Society of Medicine about the under-utilised resource of patients. 

You might want to read more and watch the video here

"We are witnessing the emergence of a new phenomenon in healthcare: self-organising, online communities of patients, carers, clinicians, researchers, academics, and industry all focused on a particular disease area."

Note: I suspect there may be more disruption to follow. Thanks for the follows, posting and retweets.

Friday, 8 July 2016

The Disruptive Patient (catalysts for change?)

Oh Dear! - a patient opinion?

We, patients, used to be so well behaved. We would wait patiently to be seen, respond to a number being called out, sit quietly to receive words of wisdom and then take our medicine like good children (well, sort of).

"When we want your opinion, we will give it to you!" a Consultant tells his patient as he leads his junior doctors on a ward round in the accompanying cartoon (source unknown).   

When we wanted to talk to others with a similar condition we might, if feeling left out attend a self-help group. If particularly daring we might even start our own group group. 

Mutterings would be heard from within the professional ranks that these were dangerous groups offering whacky advice. Sometimes, a nurse or friendly ward sister might set up a more 'formal' Support Group which included some professional advice and support. (At best - empowering; at worst keeping an eye on us!)

So Dear - the internet?

We, patients, thought it was helpful. We could look things up, begin to show an interest in our condition and take some responsibility for our health. 
We would press print and excitedly clutch pages in our hands as we headed towards our clinic appointment. 

'You can ignore all that rubbish!', was the all too familiar response. 

We persevered and began talking to patients at various times throughout the night from Australia to Switzerland, from  Ulan Bator to Ullswater. Our freedoms were being explored (some faltering steps)

My Dear Patient on-going tale!

We, patients and the public, began to be invited to join meetings to comment on health services. At worst, it remained  giving an opinion on the colour of the waiting rooms. 

At its very best, it is about informing and forming practice, policy and strategy in all aspects of health and social care. I think that some of the very best is taking place across health research where a culture of co-production is gradually taking hold. 

Yet, despite progress it still a long way to go if research is truly to reflect the breadth of our society and ensure that everyone's voices are heard.

Dear SoMe! - a smartphone, apps and SoMe (Social Media)

We, patients, are now more 'disruptive' than ever! 

May I make it clear, I am not talking about throwing that old copy of the National Geographic across the Doctor's waiting room or sticking my tongue out at the Consultant - (though there have been moments).  

Actually, I mean where we are true partners in Disruption leading to Innovation where patients begin to lead the way we think about healthcare and clinical research.

We are already away ahead of the curve in terms of use of social media for support and advice than people working in healthcare. In fact, some NHS Trusts, like King Canute, are stopping staff using social media! 

With such thinking, the printed word would be banned and writing implements seen as a health and safety risk. 

Wake Up! - the disruptive patient is here - intruding, unsettling and interfering. 

Ah, Dear Brutus (To healthcare services and systems wherever you are)

"The fault, dear Brutus, is not in our stars, But in ourselves, that we are underlings."

The advice from Cassius to Brutus which ultimately led to Ceasar's downfall reminds us that we do not have to accept the status quo. 

Shakespeare offers these words to help us understand the world. But, today, would he still be using a quill? 'SoMe or not SoMe?' The tweets and messages are our outrageous fortune. 

The Digital Age is here - Long live the disruptive patient. A Digital Discovery is around the corner with mHabitat so look for tweets and further blogging. 

Now, Dear Reader

Next week, I shall further comment upon the disruption, the disrupted and especially some of the DISRUPTERS - perhaps they are the new Shakespeare, Marlow, Wade, Kane and Hare for patient advocacy. As always, clinical research will play a part on the stage. 

* Note: My pre-cancer life was productively spent with so called challenging pupils, young people who had experienced behavioural difficulties and been repeatedly excluded from mainstream education. 

The challenge was not their behaviour and problems. The real challenge was for us, as the responsible adult, the trained professional, the educated human-being to find ways to help them learn, to find acceptable solutions and rebuild their lives. Is that not similar to the role of the NHS?

Those young people continue to drive my thinking and made me ask the questions I ask today. I am grateful for their disruption which helped change me and they way they learned. 

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Wednesday, 8 June 2016

Learning4Involvement in Practice

Real Learning in Public Involvement for Research

Last year, INVOLVE produced a briefing on the values and principles for learning and developmentThe briefing reminds us of the key concepts of respect, support, transparency, responsiveness, fairness of opportunity and accountability which are central for this type of learning.

  • What does this mean for the public and researchers learning and developing their thinking around involvement in research? 
  • What might facilitators need to consider when planning, preparing and providing workshops and events?

 At Bec and Derek (I am the Derek and Bec can be also be found at TwoCan Associates) we are developing our Facilitating Facilitators course in partnership with UCL BRC. It has enabled us to think more closely about what and how we facilitate to enable meaningful involvement. Join us #becandderek

Enjoyable: Public involvement should be agreeable and informative. It should encourage a sense of discovery and plug into the enquiring mind. The activities should be about problem solving and shared endeavour. 

Face to Face: An essential characteristic for good involvement - for researchers to actually meet with patients and for us to meet with those working in research. Later on it is acceptable to communicate through email or social media. It is a relationship and that should be built on mutual respect.

Hands on: This is 'experiential learning'. We learn from each other and between different meetings. We are not trying to be researchers but we are keen to understand things when we need to learn them.

Interactive: We need to learn from those working in and with communities. opportunity to meet and work with different people. For example, I began this journey in the world of cancer but have learned more through the interaction with other patient communities.

Relevant - This is how we make it of value to research. Those who are facilitating need to ask searching questions to ensure that all participants gain from the learning.


What do YOU think of these features?
Are they important for your learning?
Do you think these make for effective learning and development?

Friday, 3 June 2016

Guest BLOG: Everyone learns about #WhyWeDoResearch

A departure from the norm - A guest post from Bob Phillips and Jess Morgan which from a good active involvement standpoint uses the words 'cake and biscuits'. Yet how might the public help further... 

“More doctors should really know about research!” we often hear. 

Research, well conducted and methodologically valid, is a key way to make things better for all of us involved in health care, patients, families, health care professionals and the tax paying public. In this blog, we want to share with you something we’re doing to increase what doctors in training know about research!

Yorkshire centrally organises a series of training days for doctors undertaking their specialist training in paediatrics. Every year, a two-day course runs on three different occasions with the objective of taking a group of trainee paediatricians from starting to think about #WhyWeDoResearch, through generating a (pretend) study, undertaking it, analysing the (pretend) data it collects and presenting the results in a mini-conference.

Cake or biscuits are central to the sessions, as are honest, warts-and-all descriptions of what it’s like to be a clinically active academic doctor. Day one begins with an exploration of the reasons why we undertake research, what an active role in running research studies means, and some of the reasons people chose not to be directly involved. This blends into a session walking though the processes of protocol creating, ethics in research, application filling in and the pains of funding. 

The afternoon needs the participants to break into teams, and generate a raft of research ideas, debate them and come up with one to take forward. They then draw up a skeleton protocol, and overnight the study is magically* undertaken.

Bushy tailed and sparkly eyed, day two confronts the twin horrors of statistical testing and  qualitative analysis, to give a core grounding in both schools of data assessment. The importance of targeted dissemination is underlined, and the rest of the day is a flurry of activity, analysing, describing, drawing conclusions and creating poster presentations and elevator pitches for the conference that occurs in the final hour of the course.

The imaginary studies undertaken have included a study on the role of group-B streptococcal screening in reducing neonatal mortality, a trial of medications for reflux disease in infants, and a mixed-methods study of the value of ‘early’ vs. ‘late’ placement of central lines in the treatment of acute lymphoblastic leukaemia. Participant feedback has included “makes the boring stuff really interesting”, and the highlights were identified as biscuits, teaching style and beginning to understand why research really matters.

The course could develop further – and we’d love to hear how we could incorporate other elements of the ‘real’ research process in this fantastical world that gets built and polished in 48 hours. Can we have Patient and Public Involvement? Could a funding body be assembled? Would it be good to get people to write an information sheet, or review an ethics application?

This two-day intensive course takes paediatricians in training from “Huh?” to “Our study shows …” through parametric tests, grounded theory and minimally important differences. It enthuses those who had a nodding acquaintance with study design and fires some of the curious to leap into research with vigour. Could your training programme include something about #WhyWeDoResearch? Could we help you?

Thank you to Bob Phillips and Jess Morgan

You can join in the twitter conversation here or read his Storify about BecandDerek at the @NIHR_TRAINEES 

* = the session leaders create falsified data, based on the results of similar studies that have been undertaken previously. It has been quite difficult at times to persuade people that they actually are imaginary & not to believe them.

Tuesday, 31 May 2016

International Back and Neck Pain Forum 2016


The presentation I am giving today is to the International Back and Neck Pain Forum 2016 taking place in Buxton, Derbyshire UK

The title for the event is one that is close to my heart and that of many other patient advocates - RESEARCH WITHOUT WALLS. 

It is an ambitious aim which places the patient at the centre of the work and is orientated around improving the quality of overall health and wellbeing. 

I am speaking about the role patients and the public are playing across the National Institute for Health Research (NIHR) which celebrates its 10th birthday this year. 

Research without Walls very much suggests a shared endeavour - an opportunity to work together as never before. 

The changes that are already taking place are demonstrated by the public’s willingness to help research, a greater expectation on clinicians and healthcare professionals coupled with the digital revolution which we are all experiencing. Charities are changing in the way they engage with patients and the public. Access to research is becoming easier and I will always return to the most basic point that much of the  funding is public money - from taxes, donation, activities

This excellent article by Dr Peter Brindle @petbri @CLAHRC_West invites us to think more about working together more closely in health research and service delivery - towards a time of joined up research and co-production.

I will be talking about the NIHR Clinical Research Network and our GOALS of Talking More about Research, Making it easier for people to participate, Connecting with colleagues and using social media as well as supporting those who become involved.

NIHR provides the infrastructure for research in the NHS in England and hosts the International Clinical Trials Day. You can visit the OK to Ask page on this website to find out more about how to get involved yourself, or sign up to the free online course “Improving healthcare through clinical research” at to improve your understanding of clinical research.

Wendy Mitchell's blog 'WHO AM I TODAY' obviously gets a mention as does the #whywedoresearch TweetFEST organised by @ClaireW_UK and @keeling_michael

In preparing for this talk I came across @paintoolkit2 as a good example off where a patient get together with doctors to create a useful toolkit.

These are all examples where the internet is transforming the relationship between patient and doctor. You might like to read this Article on the Digital Patient by Roz Davies.

And it would be remise not to mention EUPATI and NIHR INVOLVE. I shall leave you to click on the links that take your fancy but do have a look at Cloudy with a Chance of Pain

To be surprised, to wonder,
is to begin to understand.

                                                                  José Ortega y Gasset
(1883-1955, Spanish liberal philosopher and essayist

Sunday, 22 May 2016

Thank You, Research Nurses and staff

A Thank You to Research Nurses and all others who help research to take place in health and social care! 

A huge thank you to all the many individuals and teams who help make research happen here in the National Health Service (NHS) throughout the UK and indeed across the world. 
If I had my way I would have this sign at the front of every hospital, general practice, clinic, dentists, care home, hospice, etc.  - 


                    OR something very similar!

My praise is for all our Research Nurses, other allied health professionals, data managers and the Research Delivery Managers (RDMs) [Apologies if I have missed any 'titles' - tweet your title @DerekCStewart and I will add to list]. It is you the many individuals and teams who help make research happen here in the National Health Service (NHS) throughout the UK and indeed across the world. 

Basically, if YOU are helping get research set up, helping recruit patients, collecting samples or inputing data then, simply - THANK YOU!

You do fantastic work enabling people like me to hear about research opportunities. You give the opportunity to consider participating and help us talk about the latest research findings. Wendy Mitchell's blog 'WHO AM I TODAY' eloquently expresses the need for research and the real value of being part of this research community especially during weeks that are tough to get through.. 

Last week, I had great pleasure is taking part in the 'world first' TweetFEST with the hashtag #whywedoresearch  and the campaign website.
Click on the links and have a look. It will enthuse, inspire and may just help get you out of bed to go to work with a smile on your face. 

It was a fantastic dialogue between patients, the public and healthcare workers that had neither 'sides' between these communities nor 'boundaries' of countries throughout the world. 

It was mutually beneficial, aired views, challenged opinions and made me realise what a wonderful group of individuals we have working to help find the best evidence for the care, treatment and services we receive. 

The TweetFEST was organised by @ClaireW_UK and @keeling_michael - planning was done through a tweet and some rapid direct messaging. The value of Social Media (The term is SoMe I have now found out so have a look with that #)  

Thanks were also given to all research participants by the National Institute for Health Research (NIHR) which celebrates its 10th birthday this year. 

NIHR provides the infrastructure for research in the NHS in England and hosts the International Clinical Trials Day and you can visit the OK to Ask page on this website to find out more about how to get involved yourself, or sign up to the free online course “Improving healthcare through clinical research” at to improve your understanding of clinical research. Tweetchat on the MOOC Thursday 26th 1900-2000hrs

A final word about the NIHR Clinical Research Network, with whom I work as an Associate Director one day a week. We recently produced our Strategy for Involving and Engaging Patients and the public (LINK to be ADDED).

It seems to me that the TweetFEST ticked all the boxes.

A previous post on this blog was in praise of researchers and I can assure you the the same sentiments apply - THANK YOU!