Monday, 10 April 2017

Is this what we should all know for Patient Public Involvement in Research?

Is this the information all leaders who are engaging, involving and working with patients and the public should consider, know, be able to describe and share with others? (First posted in Nov 2016)


(The term ‘leaders’ is used for all those who have a specific role or position and equally, 
includes patients / service users who advocate on the public having a greater say in research)

  • To consider and know how you are driving forward and advocating for the experience, voice and presence of patients, carers and the public to make a real difference to research in the NHS for improved health and wellbeing.
  • To know and describe the difference that the process of actively involving individuals, groups and communities have in the work you are leading.
  • To describe and share with others the impact of work with research.

There are certain key matters that we all need to know. First and foremost for me is Maintaining a healthy lifestyle - through exercise and a healthy diet (i.e Using research for our own health and wellbeing)

Should we all know how to...


Policy Context


The NHS is there to improve our health and wellbeing, supporting us to keep mentally and physically well, to get better when we are ill and, when we cannot fully recover, to stay as well as we can to the end of our lives. It works at the limits of science – bringing the highest levels of human knowledge and skill to save lives and improve health. It touches our lives at times of basic human need, when care and compassion are what matter most.

The NHS is founded on a common set of principles and values that bind together the communities and people it serves – patients and public – and the staff who work for it.


Research is a core part of the NHS. Research enables the NHS to improve the current and future health of the people it serves.  The NHS will do all it can to ensure that patients, from every part of England, are made aware of research that is of particular relevance to them.  

NHS England published their Research Plan in April 2017. They will support the NHS by working with partners to define what research is needed to address future needs and why. We will co design a new systematic means of better articulating the research needs of local NHS systems to NIHR, AHSNs and other research funders including charities.


The Academy of Medical Sciences explores the relevance of research in this report for the Health of the Public in 2040. A further consideration is the Accelerated Access Report and the digital drive in line with the Information and Technology for Better Care Strategy.

The King’s Fund regularly maintains a reading list on Public Involvement in Health Services. It can be found here as well as providing a valuable insight into a Digital NHS.

National Voices recently produced a number of I Statements about Research and Innovation

Patients and the Public with Research

There are a number of valid reasons for involving the patients, carers and the public in research. These range from greater accountability, increased openness to simple and effective practical improvements.

The NIHR in England - The Going the Extra Mile report provides the strategic vision and direction for our work in engaging and actively involving patients, carers and the public in all aspects of research. It sets goals for the citizen
By 2025 we expect all people using health and social care, and increasing numbers of the public, to be aware of and choosing to contribute to research by:
  • Identifying future research priorities and research questions
  • Informing the design and development of innovations
  • Participating in research studies
  • Advocating for the adoption and implementation of research in the NHS
This contribution to research and a healthier nation will be openly acknowledged and recognised in the same way that other activities including volunteering are a celebrated part of civic society.
A core recommendation is about co-production so you may on find this a useful guide to the principles and practice of co-production. Some research on co-production may also be worth a read.

As a leader you should ensure that you contribute to INVOLVE and ensure that information held on their website about where you work is accurate. Equally there is a greater synergy with Public Engagement and this report on Social change and public engagement with policy and evidence offers helpful guidance.

You can read about how INVOLVE are currently focussing on Learning & Development, Diversity & Inclusion and Co-production as well as Standards for Involvement by clicking the link.

Simon Denegri’s - Lay Review is a good source of current issues and announcements. You may want to follow Simon on Twitter @Sdenegri

Research Guidance and Ethics - The NHS Health Research Authority (HRA) protects and promotes the interests of patients and the public in health and social care research. It works to make the UK a great place to do research where more people have the opportunity to participate in health and social care research and continue to feel safe when they do. The HRA has a specific set of pages on its website for Patients and the Public about taking part and getting actively involved. It also provides guidance for researchers on Public Involvement in research and research ethics committee review - a statement jointly developed with INVOLVE.


World Context - The UK may be seen as a ‘world leader’ in this area yet we do need to consider what is happening elsewhere by exploring, for example: the European Patients‘ Academy on Therapeutic Innovation (EUPATI), the Irish Platform for Patient Organisations, Science and industry (IPPOSI).  Further afield there is the Canadian Institutes for Health Research and their Strategy for Patient Orientated Research.You may also choose to look at the developments of Involving People in Research in Western Australia and the Patient Centred Outcomes Research Institute (PCORI) in the USA.

These cover many of the leading economies and we risk deepening the health inequalities unless we also look at what is happening in there countries. I am extremely grateful to @BellaStarling for drawing my attention to her exceptional blog post Science Engagement - going global. It is illuminating and challenges all of us.


The Third Sector - There are many charities who focus on health research and others who carry out research. Many are now actively involving patients and the public in the research that they fund. This ranges from priority setting, improving study design and sitting on funding decision making panels.

The Shared Learning Group on Involvement brings together a number of people working in charities doing patient, public involvement and engagement. They also have a ‘research sub-group’. Parkinson's recently produced an excellent guide for their researchers on patient and public involvement. The Association of Medical Research Charities (AMRC) is a further good source of information.  

Universities - There is a significant amount of public involvement taking place across all academic institutions. This is partly driven by the Research Excellence Framework which requires research work to have ‘reach’ and ‘significance’. It is worth finding out about the Academic Health Sciences Network (AHSN) and the local Collaborations for Leadership in Applied Health Research and Care (CLAHRC)



Please Note: I am grateful to those who have suggested other sources and would really welcome any recommendations which will be acknowledged. This is intended as a living document which @BellaStarling has shown.

Tuesday, 21 March 2017

Accelerating Innovations in the NHS


There are many inspiring people doing exciting things with technologies that have the power to transform our lives as patients. I had the absolute pleasure of hearing from some of those who are fellows of the NHS Innovations Accelerator programme run by @NHSEngland
Each person had 5 minutes to explain their work at the Clinical Innovation & Partnering World congress, mainly sponsored by Raja BanerjiTata Consulting Services and hosted by Terrapin 


Owise - This is a free app enabling breast cancer patients to record experiences of their care & offers tailored health information as to treatment & care. OWise-breast cancer was presented by Anne Bruinvels. It is available in the UK @OWise.UK


Patients Know Best - This is a single, patient controlled record developed by Lloyd Humphreys. This means that patients hold all their medical information which they can share across different health care providers in a single record owned by them. 

Matt Jameson spoke about Health Unlocked - This is described as the world’s largest peer to peer health networking site enabling patients, caregivers and health advocates to connect safely online with guidance from credible experts (eg: charities) and signposts people - using AI technology - to relevant content based on their profile.  It has 4m visitors and provides digital care plans for all people diagnosed with cancer in the UK



Coordinate My Care - Coordinate My Care (CMC) is a web-based IT platform enabling digital, multidisciplinary urgent care planning for end of life care.This was presented by Julia Riley. CMC empowers patients to make decisions with their GP about the interventions they receive, and allows caregivers to better understand patient preferences and clinical needs. 

Tom Whicher outlined DrDoctor an online & text based service allowing patients to confirm, cancel, and change appointments digitally. Hospitals can maximise and manage patient volume to best fit their capacity as the technology can target long waiting lists and automatically book patients into empty slots in clinics. In addition, it provides digital assessments before & after appointments, saving time for both patients & caregivers



Tony Bowden from Helicon Health  spoke about their digital healthcare activation platform for identification, screening, prevention, communication and management of chronic diseases aimed at improving health outcomes and reducing costs


11Health  - This sensor device was described by Robert Fearn to track ostomy bag fluid volumes and alert patients when nearly full to improve control and quality of life.











I was struck by the enthusiasm shown by these individuals, their products but especially by their interest in using technologies to help patients get through the system

You can find out more about the people who are NHS Innovations Accelerators* here

* The aim of this programme is to 'create the conditions and cultural change necessary for proven innovations to be adopted faster through the NHS for demonstrable patient and population benefit.
The NHS Innovations Accelerator is delivered in partnership with all 15 Academic Health Science Networks across England.

You can follow them 

@OWise.UK

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