Tuesday, 31 January 2017

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

Tuesday, 24 January 2017

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  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!