Golden Hearts - 'The inheritance of loss'

Golden Hearts is an evocative and compassionate drama described by the author as being drawn upon ‘the inheritance of personal loss’. Any death has an impact, but when it is that of a brother or a father at a relatively young age then it has an immediate and long term effect which resonates through generations.

It is a tribute to the skills of the writer Sudha Bhuchar along with a talented cast that such strong emotional content is handled deftly with touches of humour, the use of music and a minimalist set. Golden Hearts weaves together multiple stories around the unacceptably high rate of heart disease particularly amongst many people of South Asian heritage.

It is a performance that truly touches all. It is universal in tackling issues of health and wellbeing, diet and lifestyle, culture and community. It addresses the patient - doctor relationship, communication and information, attitude and facts. It steadfastly refuses to be a drama with a message. I sat, absorbed in watching the story whilst simultaneously translating the emotions to my own experience and journey of cancer, albeit over twenty years ago.

It is a story about a South Asian family that can equally translate to any family whether in Nottingham, Glasgow or Leeds. Yet, the fact is that one community is more affected than many others. This drama sets that out for us to see and think about this undeniable fact.

This is theatre as enquiry. It is a hearing, questioning and interrogation of people’s stories. It  reflects and refracts through different prisms of real life experience, the role of an artist in residence, clinical uncertainty and a study in genetic research. It is a piece of work that is continually evolving and developing, much like the research that is taking place alongside.

It is drama that belongs to the community and mirrors the values, thinking and practice of the East London Genes & Health research. It is about the community being fully, actively and meaningfully involved. It is a performance taking place at Rich Mix - 'a cultural space for everyone at the heart of East London'.

This challenges many of the ways in which we have actively involved people in making sure that research is relevant and patient centred. Golden Hearts turns traditional thinking on its head.

We are invited to hear the voices of local people, to observe people’s experiences and to bear witness to the Sudha’s personal story.

It is, however, Sudha's role as 'artist-in-residence' with the genetic research that brings yet another dimension. This post asks us to think about how we capture, make sense of the patient story and present it in a way for interpretation, meaning and understanding. It touches on the research but is far more closely about health and wellbeing. In this way to avoids being drama with a message. The ‘artist in residence’ is the gatherer, questioner and host for the audience.

East London Genes & Health is one of the world’s largest community-based genetics studies, aiming to improve health among people of Pakistani and Bangladeshi heritage in East London by analysing the genes and health of 100,000 local people. It is a testament to the clinicians, senior investigators and the team that the starting place is their uncertainty. The community and the research walking step by step.

The most powerful scenes, for me, are those moments told directly or re-told by the characters. These were all, in Peter Brook’s phrase, ‘as if’ we are there with the doctor or listening to the telling about the heart attack.

These are the periods of real tension as we wonder what will happen next. Most informative are the dialogues between clinician and patients. Most enjoyable is the interaction between patients and families in waiting areas and wards. Most touching are the memories of Bangladesh, of Tanzania, East Africa told mostly through song which remind us of the richness derived through the inclusion of different cultures.

It was a privilege to be invited and to listen to the discussion following the performance led by Samira Ahmed who touched on her own experiences, along with Prof David van Heel and Sudha Bhuchar

Thank you Virginia Govoni, Sudha Bhuchard, @East LondonGenes but especially to those whose stories are being told. 

Drama has a real place for high quality research. 

PS Lovely to meet up again with Karen Spicer - have twenty years passed so quickly? I will post a picture of the Stepping Stones pack on Twitter we developed @InterplayLeeds

Using Twitter at Health Research Conferences

Does anyone notice when we use Twitter at Health Research Conferences? 
- Does anyone care????

Like many others, I use Twitter at Health Research Conferences and often get a few re-tweets, likes and some impressions. I tweeted randomly and didn't really have a plan. That has changed.

I was recently invited to be a speaker at the Kent Research event #healthresearchkent and decided to be a bit more organised and tactical in my approach.

I prepared a number of Tweets and used Hootsuite to schedule them at points before the event and during my talk.

As I was preparing my Tweets I began to think about WHY I was going to Tweet. 

I have come up with 5 reasons but wondered what are your reasons? Please Tweet using #SoMe

I did so to ENCOURAGE dialogue in general and promote further debate around a topic rather than just rely on a brief Q&A. I want to encourage people who had been tweeting using the #healthresearchkent  

I tweeted to various people using their @ to invite them to get involved. 

I also wanted to CONNECT people who were attending, e.g.: @EcpdCarolyn @Ssarahdickenss and with those who weren't, @JBBC @kareninns1 @NIHRCRN_KSSPPI I was keen to make other relevant connections such as #HARTSofthePossible and #whywedoresearch. Twitter gives us a real opportunity to connect with people, organisations and campaigns

Scheduling Tweets allows us to GUIDE the conference participants to many of the resources which exist such as advice and guidance on Public Involvement from @NIHRINVOLVE The Learnzone is a great place to start on the National Institute for Health Research new website. We can choose to provide links to policy documents, good examples of practice and useful websites.

It is a great way to CELEBRATE such initiatives as the massive open online course Improving Healthcare through Research which provides information that is accessible for all.  Using Twitter at means that we can speak up about the Patient Research Ambassadors @PRAI 

Twitter is a great way to say THANKS - to researchers for the work you do, for all the people who volunteer to take part in studies, to conference organisers and attendees who share their work and are committed to Evidence Based Practice. Thanks to #healthresearchkent for a great day! 

I thoroughly enjoyed hearing the various speakers on a great range of topics.

Finally, what about the missing word - IMPACT. Thanks to Carrie Jackson and SYMPLUR for producing this excellent summary of the activity  - 1,324,974 Impressions is pretty good!


@WeNurses summed it up beautifully - Don't just tweet ... think WHY!

"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 here. You 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.

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

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)... 

https://www.youtube.com/watch?v=UZQQGIEP2o4

https://scad.lcbru.le.ac.uk/

http://beatscad.org.uk/

https://www.bhf.org.uk/news-from-the-bhf/news-archive/2016/february/scad-disease-causing-heart-attacks-in-women

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.

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.

IMAGINATION - CREATIVITY - INNOVATION 



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."

The Bigger Boat 

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

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 Involvement...an 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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