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.



Friday, 25 November 2016

Is this what we should all know?

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? 


(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.  

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 www.invo.org.uk 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. .

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

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 User Involvement in Voluntary Organisations - Shared Learning Group brings together a number of people working in charities doing patient, public involvement and engagement. They also have a ‘research sub-group’ who recently published a very helpful article on Involving People in Lab Based Research. 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, 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.

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."




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