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? (Revised May19 - First posted in Nov 2016)

(The term ‘leaders’ is used here 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)

• Knowing how to drive forward and advocate 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.
• Understanding and describing the difference that the process of actively involving individuals, groups and communities have in the work you are leading.
• Defining and sharing 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. We all need to use research for our own health and wellbeing.

The real question is how do we help others...

Take Part in Research

Get Involved

Use Research

Learn about Health Research

Add a Question

Get help

Click on the caption or you can also use these links...

• Find out about current research opportunities - Search at the United Kingdom Clinical Trials Gateway
• Be able to help and get actively involved? - Patients & Public in the work of the NIHR. Also, have a look at the Opportunities at People in Research
• Find out about research has taken place - Great briefings from the NIHR Dissemination Centre
• Discover more about Research - A free online course which runs twice a year
• Contribute questions and ideas for research - for NIHR Evaluations, Trials and Studies
• Extend their skills and knowledge Learn more about ‘involvement’ with NIHR INVOLVE

Policy Context

The National Health Service (NHS) Constitution states:

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.

The Constitution Handbook adds:

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. The Academy also looks at Enhancing the Use of Scientific Evidence and created a microsite How can we all best use scientific evidence. A further consideration is the Accelerated Access Report and the digital drive in line with the Information and Technology for Better Care Strategy. in November 2018, the Academy published an interesting report on the use of Patient Data.

The Association of Medical Research Charities has recently produced a a report Making a difference: Impact 2017. In 2018 the AMRC also produced a useful graphic of the work of charities.

The King’s Fund regularly has 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 general guide to the principles and practice of co-production.

As a leader you should ensure that you contribute to NIHR 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. Please contribute to the TEST BEDS on standards.

Most recently, INVOLVE have produced some good principles on co-production in research

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

In all of this activity there is always the present danger that involvement remains "dominated by a culture that is white, upper-middle class and male". Follow @PeepsKnow and learn much from their excellent 'People’s Knowledge and Participatory Action Research. Escaping the White-Walled Labyrinth'. It is incumbent on all of us to listen and be advocates for equality and to challenge discrimination in every form.

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 makes the purpose of involvement clear and provides guidance through the application system.  

Payments, honoraria and expenses - This useful article was brought to my attention about involving people who are in receipt of benefits. It is from SCIE.

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. In Catalonia, AQUAS, the equivalent of NIHR has a website in English is: http://aquas.gencat.cat/en/ambits/recerca-salut/ and have written wisely on Engagement 9their terminology for involvement): http://aquas.gencat.cat/en/ambits/recerca-salut/saris/ 

These cover many of the leading economies yet we risk deepening the health inequalities unless we also look at what is happening in their 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)

CHALLENGES

But how far have we go? A couple of recent articles that provided useful reflections on how involving patients and the public in health and care research that are worth a read.

Public Participation in Health and Social Care: Exploring the Co-production of Knowledge from Peter Beresford at Essex 

Patient and public involvement in NIHR research 2006-2019: policy intentions, progress and themes from the Oxford BRC by Trish Greenhalgh - sent by Mark Taylor


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.

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 Banerji, Tata 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. 

 @CoordMyCare

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

@patientsknowbes

@HealthUnlocked  

@DrDoctorApp

@CoordMyCare

@heliconhealth
@Ostom_i

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