A Place for Learning

Inaugural Lecture – Honorary Professor Derek C Stewart, OBE

Delivered online – 4th November 2020 – https://www.youtube.com/watch?v=XEuB1B4jYz8

Dia Dhuit

In Scots we say: A Cuid Mile Fàilte a chairdean 

(A hundred thousand welcomes, friends)

Today I say: Dia Dhuit – Jee-ah gwitch agus Go raibh maith agat – gur-uv mah ah-guth (hello and thank you)


I profusely thank Prof Ciarán Ó hOgartaigh, the President of the National University of Ireland, Galway and the University Council for your generosity in awarding me this honorary title. I am moved beyond measure and humbled by the responses I have received. I welcome everyone who have joined us today.

Galway Bay

Involving patients and the public with research is A PLACE FOR LEARNING. It is a walk along the shore between the land and sea, getting our feet wet, sailing off and returning to harbour.

NUI Galway

This award by NUI Galway tells a great deal about NUI Galway. It recognises the College of Medicine, Nursing and Health Sciences as open and transparent. It illustrates a group of people, sufficiently assured, to say there are things we don’t know, leading through enquiry rather than just instruction.

Through this award in 2020 we learn much about NUI Galway – 

  • its inclusive nature and community focus
  • the ambition of excellence for research and innovation 
  • We learn about the people
    • the way they engage and involve patients and the public in health 
  • We learn about its history

NUI Galway beginnings are rooted further back, 175 years ago in the period of The Great Famine. We should perhaps take a second to remind ourselves during this current Covid-19 pandemic about the value that centres of learning can play in times of crisis: to discover, give us purpose and hope.

The President spoke about much of this at the Patient & Public Involvement Conference in 2019I am honoured to join this community, your spirit and ambition.

Learning from Experience

25 years ago, I was just completing my radiotherapy treatment for cancer of the larynx – under 7 stone in weight; I was being medically retired from my work as a teacher, aged 45 with an unknown future.

Yet, it seemed that I was oddly released; I became acutely aware of what was important in life: that it is just one life. The value of family, looking after ourself – I had to learn to take small steps and gradually increase my ability

A Promenade

A walk along the Promenade – I want to explore why learning from each other is a far more valuable outcome than only changing a participant information leaflet, lay summary. 

I would go so far as to say that, as effective as that changed leaflet can be, it only scratches the surface of change that we are capable of achieving. We have the same aim, researchers and the public, to improve people’s health and wellbeing. 

To achieve real change we have to look at the culture of research, the context and content of how we involve people and what we are learning. We have to address the real challenges of language and understanding. I will touch on Covid-19. I will finish with a few reflections on catalyst that this award means for me.

My first stop is Culture 

It seems like Oscar Wilde understood about fake news!

When I am involved with Galway, I feel I am part of what can best be described as Street Musicians (like a Mexican Mariachi band) touring the area. You know those bands where all players take turns to play solo, lead the singing and conduct the band. 

The bands explode with enthusiasm and a spirit that belongs within the community. The lead conductor, almost invisible, because they have created in the band an energy of its own. 

You don’t feel you need to be a musician to join in – tap your feet and clap your hands. If we feel included, we are included. If we are to make health research accessible, then we have to learn to be more of an inclusive street band, folk musicians or travelling players. 

This culture in Galway matched perfectly with the requirements set out for outstanding Patient, Public Involvement Ignite (PPI Ignite) programme established by the Health Research Board (HRB), Ireland. PPI Ignite promotes partnership working and does not try to centralise any particular model. It encourages and helps to host conversations and encourages exploration which we see in abundance in the same way as any good educator.

In response to the Black Lives Matter Campaign we are now rightly being asked to consider how we are addressing the effects and causes of health inequalities, inclusion and diversity. 

We have a greater chance to address these inequalities when we are fully engaged and part of the communities we serve; when we innovative different ways to engage and involve the public.

All too often patient and public involvement is narrowed to bringing a few people to join a rather select orchestral ensemble – invited to what can feel like an exclusive club but only to comment on certain things. 

Not so in Ireland where this culture of open collaboration is thriving in health, research and even with trial methodologies.

CONTEXT One person’s beer is another’s loaf

The second stop on this promenade is CONTEXT – Why we are doing this, who we do it with and where we are the critical factors. I am using the NUI Galway Research hashtag #PurposePeoplePlace

Learning is at the heart of numerous innovative projects that involve Galway. I will mention the Purpose (the intent) and the People (the learners) before naming the projects.

What strikes me in all of these projects is the responses and reactions of the researchers -who are inspired and motivated by what they are learning and that includes; challenging their perceptions, testing their assumptions and gaining different perspectives about the practice and conduct of research. The researchers are learning as much about the communities. The learning has mutual gain. It is more than working together.

Context also depends on the setting and where you are standing

The way a researcher describes their work is different when communicating about a clinical intervention trial, a lab-based science study, developing a medical device or the statistical analysis components in trial methodology. 

Equally, learning from a patient’s experience will be different in cancer from someone with dementia, a stroke or diabetes. The experience of a loved one or colleague provide another perspective. The general public may have very different opinions from someone directly affected. It is what do I need to learn, who from and how?

Yet, both the researchers and those affected by a health condition have a similar desire to make a difference and it is our common interest to ensure that the study is relevant, makes sense, is suitable, understandable, practical and that it is the appropriate question to be asking.   These provide clear needs for joint endeavour and clarity of purpose rather than defining the differences between us. 

The examples I used from Galway all illustrate learning taking account of the context for precise audiences and designing approaches to match.

Content –

A long loaf of bread is best eaten sliced into sandwiches

I have been attempting to learn Scottish Gaelic during Covid-19. I have found an online app (Duolingo) that is fun, suits my needs and gently pushes me to progress and uses a selection of images, pictures and modern references to help. But I can also choose to learn when and where it suits me.

Just as we don’t necessarily have to understand all the grammatical theory to be able to talk together, we don’t need to know all about the research or the science to be involved. We need to know the basics and what is required.  

Researchers don’t need to know all the ins and outs of my treatment journey if their research question is only looking at improving diagnosis. 

Let’s learn to be smarter and provide learning opportunities in small steps, in way that suit our needs, styles of learning and related to the task. How can we use digital technology to make this easier?

Challenge – when trying to climb an impossible cliff or being close to the edge 

For patients being diagnosed with a life-threatening illness it can feel like falling off a steep cliff. For researchers the idea of having to go an involve patients and the public can feel like a steep climb. It is why we have safety barriers, teach rock climbing and help people have confidence to try.

In education, I worked with young people experiencing difficulties – sometimes called challenging pupils but a remark by the Chief Inspector of Schools who said the challenge is not about the young people – the real challenge is our professionalism as teachers to respond to their needs, find ways to address certain aspects of their lives and provide opportunities to help them develop as individuals contributing to society. 

The opportunity for research is to learn from those who are intended to benefit and see that research is properly informed by patient experience and insight, is being grounded in real life and that is being shaped by input with patients and the public. This demonstrates integrity and gives assurance for all. 

When we see patient/public involvement as an opportunity and a place for learning it provides the space to understand each other’s lives and work. This is the cultural change that I see taking place in Ireland – the adventure, the abseiling, the rock climbing and 

The relationship between patients, the public with health researchers is fundamentally the reciprocal acquisition of knowledge, skills and understanding through experience or study. These changes in attitude, in values, in the manner in which we live our lives happens better in face to face meetings even if only online through Zoom – it is the social interaction that helps learning.

If you talk to someone in language they understand that goes to their head. If you talk to them in their language, that goes to their heart.”

Nelson Mandella

When we therefore take the Mandela quote to speak in their language, we should perhaps ask researchers…

  • Would you like your research to be relevant to those who are intended to benefit? 
  • Do you want it to be understandable as possible to the participants? 
  • Do you want it to recruit the right number of participants quickly?
  • Do you want to have relevant and meaningful outcome measures? 

Researchers can then see the value of engaging and actively involving people. Perhaps less so if we just say – where is you PPI?

In the same way for patients and the public – Not just look at this leaflet!

In terms of Trial Methodology Research – Do you want to know how new approaches are transforming research to help find answers more effectively, with greater efficiency, in ways that are smarter, speedier and with greater accuracy? 

Researchers might like to consider asking Patients/Public – Would you like to know more about your health and current research? Would you like to understand how we do research? Would you be interested in how research is developing? 

I say Tomato… 

When a researcher writes dysphagia in a proposal and/or participant leaflet and I suggest just putting swallowing then the leaflet is improved for the participant. However, if we write swallowing and add the medical term in brackets. We have both learned something. 

Personally, I then realised I wasn’t the only one who struggles with swallowing and this opened the door to finding research papers on the subject. 

It is precisely this Reciprocity that places the relationship between research and the public as belonging with learning – whether we call it PPI, co-production and a few new ones I have found called people science, human centred design, digital engagement and user testing. 

Whose Research? 

We should always be seeking ways to learn from and about each other in order to gather the evidence in the best way possible to improve people’s lives. Otherwise it is just poor consultation and a transactional process. By placing it in learning we provide the opportunity for personal growth and understanding.

The People’s Trial illustrated perfectly that we can ask people about the question we should be asking, to take part, to hear news about the study AND to ask the participants how they want to be informed about the results

It is when we talk to each other through a prism of learning that it becomes personal and can be internalised and have meaning. 

Covid-19 and a place for learning

I believe this all belongs with learning – I am not saying it belongs to learning – it belongs with learning; nor have I said the word teaching – as this is not necessarily a world of traditional schooling with a teacher and pupil interaction. It is closer to autodidactic and experiential learning. Jerome Bruner talks about containers of liquid can that can be equally distributed.

We, the patients/public and the researchers are at heart both learners and teachers, sharing experiences, information through the prism of learning. Here are some useful reads…

Covid-19 set back the involvement of patients and the public in the UK. Yet it was very similar with HIV and AIDs. In the UK that was certainly a time when involving patients and the public was a chance to be in the same place of knowing little and finding ways to learn from each other.

Ireland is in the middle of a paradigm shift in the culture of research through an openness and willingness to learn together. It is through imaginative and creative social interaction and play that we learn even if restricted from meeting face to face.

What do I hope to achieve through this award?

I intend this to be the catalyst for my thinking about the part that learning plays in this relationship of involvement with health research and the public. I am going to further explore many of the topics I have raised with this lecture…

  • Enabling us to work together with Charities and Patient Organisations?
  • Improving people’s health through research and its methodologies?
  • Addressing health inequalities and improve inclusion?
  • Using digital technology    
  • Describing the mutual benefits through the lens of learning?

My involvement in health research was in part driven by my curiosity to find out about my illness whilst my experiences as an educationist were to improve things for others. I am going to bring the educationalist in me and the patient practitioner together.

I hope I have highlighted how we might learn from history, apply principles of collaboration, continue an ambition for excellence, share practice, foster leadership that promotes a team culture and use learning as a means of reflection as well as personal and professional development.

It is surely by learning about research that we can be critical thinkers, better prepared to ask effective questions, challenge fake news and address a worrying trend that dismisses science and expertise.

Thank You – Finally, it seems appropriate to end with a word that is the same in Irish and Scots that has universal understanding

FIGURING IT OUT

Reflections on Patient/Public Involvement with Numbers, Statistics and Data

Derek C StewartLynn LaidlawIrene Soulsby and Beatriz Goulão

The following notes were initially written in preparation for a meeting about Patient, Public Involvement with Numbers, Statistics and Data run by Beatriz Goulão in December 2020. Since then, it has developed into this article with contributions from the public partner participants and Bea.

It seems to us that that the active involvement of patients and the public with data, statistics and numbers is more than just possible – it adds up! The features and benefits we have categorised were identified from the various tasks we were being invited to consider. It was then possible to comment on how this might have value.

It actually appears more about what we, as patients/public, know already rather than needing to understand and immerse ourselves in numbers and/or statistics! 

It is an opportunity to learn about how statistics play such an important and increasing part in health research.

Our presence, voices and contributions seem to be focussed on assurances, reality checking and practical advice. It is a chance for mutual learning. It is less about our patient experience though that remains a valuable driver that keeps us going. 

In Lynn’s words our involvement asks the most fundamental question – “It may be measurable but is it meaningful?”.

SOME OF THE KEY FEATURES & BENEFITS

1. Involvement of Patients & Public can provide assurance to Statistical Research and to Statistics in Health Research by helping…

  • Integrity – to demonstrate openness, transparency and accountability
  • Value – the knowledge and understanding that is derived from experience, voice, insight
  • Quality – the improvements made from practical suggestions, alterations and advice *

These are as such the big-ticket issues about the moral compass of research, the democratising and the governance as well as helping improve its quality yet they signal important aspects of trust and probity. 

Ultimately, with publicly funded health research is what is being measured meaningful for patients or is it just about measuring what is measurable.

2. In real life terms Patients & Public with Statistical Research helps to

  • Ground research in reality: about relevance, the possible and what is practical
  • Make sense of numbers: Thinking about understanding of language, images, descriptions and communications especially with the interpretation
  • Motivate the work: Acceptability and assurance to give confidence or offer caution

A number of researchers have commented on how they find this reality checking a means of staying in touch with the direct or consequential purposes of their work. They are assured and reassured by the involvement. It helps confirm the value of the work or invites further thinking. This can also be reassuring to the public to know that the patient voice has been instrumental in developing the research.

3. The Involvement can provide practical advice and contribute to… 

  • Attitude and viewpoints of patients/public: thoughts, concerns, opinion and perspectives
  • Advice and comment on actual numbers: advice, insight, reach
  • Communication and dissemination on statistics language, graphs and pictograms

As patients we are often bringing that experience to bear directly on the intervention (the medicines, surgery, treatments, the radiotherapy, etc) yet here it shifts to providing a more general perspective that helps with meaning and understanding. 

WHAT COUNTS FOR PATIENTS & THE PUBLIC?

For those of us who are Patients/Public Partners and get involved with Statistical Research, we may consider gaining

  • Greater awareness about statistics and the trial methods that are used
  • Increased knowledge and understanding of statistics and health research
  • Improved critical skills to read, analyse and interpret data to challenge media reporting and fake news 
  • Strengthened ability to make more precise observations and ask improved questions when contributing to research
  • Better understanding of the role patients/public can play in this type of research
  • Bear witness to the efforts and ethical considerations that are taken

WHAT DOES THIS ADD UP TO FOR RESEARCHERS?

For those of us who are statisticians and are considering involving Patients and Public Partners in our research and our analysis, we may consider gaining

  • New perspectives to improve data collection, analysis and interpretation and ensure research results are relevant and meaningful: patients and the public will bring their own lived experience to important data related questions such as the best way to collect data, what to take into account when analysing it and how to interpret it in a real-life context. Numbers are meaningless without a context. Patients and the public are key in embedding numbers with meaning.
  • Better communication skills: researchers will have to develop efficient and clear ways to communicate about data, statistics and statistical methodology. This is will help develop their communication skills 
  • Greater empathy: for researchers that are rarely in contact with research participants or patients; talking to them about their research and statistical methods is an opportunity to better understand, first-hand, the impact data and statistics can have in improving people’s lives
  • Understanding of our processes and assumptions: having to present and explain our assumptions leads to better self-understanding of our own processes and biases which improve transparency, credibility and ultimately better research. 

A FINAL TALLY

It may be worth noting that a deep knowledge of numbers and statistics is not an essential requirement to get involved – that is the role of the statisticians!  A basic understanding of calculations, charts and data and an interest in how to capture and report the most appropriate information can be helpful. You might end up learning about data analysis, trends, forecasts and much more but only if you want.

We can bring, think and apply our knowledge from budgeting, reading graphs and charts in the media. It is a great opportunity to meet loads of people who are keen to involve the public in this type of work as they want to make a difference.

Research will ultimately gain from patient and public involvement in statistics: numbers underpin quantitative research; there needs to be clear and open discussions about numbers to avoid power imbalances and ensure all stakeholders feel equally heard during the research process. This will lead to research that is more democratic and relevant to patients and the public.

We, as patients want to know if research doesn’t meet its primary, statistical endpoint is it the intervention, the research methodology and/or medication etc that was ineffective or the way we chose to measure it? 

* Integrity, Value and Quality taken from Alice Biggane’s research https://researchinvolvement.biomedcentral.com/track/pdf/10.1186/s40900-019-0170-2.pdf

You can read Lynn’s recent blog post for HDR UK here –

If you are interest in learning more, the following sources might be helpful

Use My Data is a movement of patients, carers and relatives promoting the benefits of sharing data.  

HDR UK Voices – a network of Patient & Public Involvement with Health Data Research UK

Podcasts about numbers and risk with the statistician, author and broadcaster

FIGURING IT OUT

Reflections on Patient/Public Involvement with Numbers, Statistics and Data

Derek C StewartLynn LaidlawIrene Soulsby and Beatriz Goulão

The following notes were initially written in preparation for a meeting about Patient, Public Involvement with Numbers, Statistics and Data run by Beatriz Goulão in December 2020. Since then, it has developed into this article with contributions from the public partner participants and Bea.

It seems to us that that the active involvement of patients and the public with data, statistics and numbers is more than just possible – it adds up! The features and benefits we have categorised were identified from the various tasks we were being invited to consider. It was then possible to comment on how this might have value.

It actually appears more about what we, as patients/public, know already rather than needing to understand and immerse ourselves in numbers and/or statistics! 

It is an opportunity to learn about how statistics play such an important and increasing part in health research.

Our presence, voices and contributions seem to be focussed on assurances, reality checking and practical advice. It is a chance for mutual learning. It is less about our patient experience though that remains a valuable driver that keeps us going. 

In Lynn’s words our involvement asks the most fundamental question – “It may be measurable but is it meaningful?”.

SOME OF THE KEY FEATURES & BENEFITS

1. Involvement of Patients & Public can provide assurance to Statistical Research and to Statistics in Health Research by helping…

  • Integrity – to demonstrate openness, transparency and accountability
  • Value – the knowledge and understanding that is derived from experience, voice, insight
  • Quality – the improvements made from practical suggestions, alterations and advice *

These are as such the big-ticket issues about the moral compass of research, the democratising and the governance as well as helping improve its quality yet they signal important aspects of trust and probity. 

Ultimately, with publicly funded health research is what is being measured meaningful for patients or is it just about measuring what is measurable.

2. In real life terms Patients & Public with Statistical Research helps to

  • Ground research in reality: about relevance, the possible and what is practical
  • Make sense of numbers: Thinking about understanding of language, images, descriptions and communications especially with the interpretation
  • Motivate the work: Acceptability and assurance to give confidence or offer caution

A number of researchers have commented on how they find this reality checking a means of staying in touch with the direct or consequential purposes of their work. They are assured and reassured by the involvement. It helps confirm the value of the work or invites further thinking. This can also be reassuring to the public to know that the patient voice has been instrumental in developing the research.

3. The Involvement can provide practical advice and contribute to… 

  • Attitude and viewpoints of patients/public: thoughts, concerns, opinion and perspectives
  • Advice and comment on actual numbers: advice, insight, reach
  • Communication and dissemination on statistics language, graphs and pictograms

As patients we are often bringing that experience to bear directly on the intervention (the medicines, surgery, treatments, the radiotherapy, etc) yet here it shifts to providing a more general perspective that helps with meaning and understanding. 

WHAT COUNTS FOR PATIENTS & THE PUBLIC?

For those of us who are Patients/Public Partners and get involved with Statistical Research, we may consider gaining

  • Greater awareness about statistics and the trial methods that are used
  • Increased knowledge and understanding of statistics and health research
  • Improved critical skills to read, analyse and interpret data to challenge media reporting and fake news 
  • Strengthened ability to make more precise observations and ask improved questions when contributing to research
  • Better understanding of the role patients/public can play in this type of research
  • Bear witness to the efforts and ethical considerations that are taken

WHAT DOES THIS ADD UP TO FOR RESEARCHERS?

For those of us who are statisticians and are considering involving Patients and Public Partners in our research and our analysis, we may consider gaining

  • New perspectives to improve data collection, analysis and interpretation and ensure research results are relevant and meaningful: patients and the public will bring their own lived experience to important data related questions such as the best way to collect data, what to take into account when analysing it and how to interpret it in a real-life context. Numbers are meaningless without a context. Patients and the public are key in embedding numbers with meaning.
  • Better communication skills: researchers will have to develop efficient and clear ways to communicate about data, statistics and statistical methodology. This is will help develop their communication skills 
  • Greater empathy: for researchers that are rarely in contact with research participants or patients; talking to them about their research and statistical methods is an opportunity to better understand, first-hand, the impact data and statistics can have in improving people’s lives
  • Understanding of our processes and assumptions: having to present and explain our assumptions leads to better self-understanding of our own processes and biases which improve transparency, credibility and ultimately better research. 

A FINAL TALLY

It may be worth noting that a deep knowledge of numbers and statistics is not an essential requirement to get involved – that is the role of the statisticians!  A basic understanding of calculations, charts and data and an interest in how to capture and report the most appropriate information can be helpful. You might end up learning about data analysis, trends, forecasts and much more but only if you want.

We can bring, think and apply our knowledge from budgeting, reading graphs and charts in the media. It is a great opportunity to meet loads of people who are keen to involve the public in this type of work as they want to make a difference.

Research will ultimately gain from patient and public involvement in statistics: numbers underpin quantitative research; there needs to be clear and open discussions about numbers to avoid power imbalances and ensure all stakeholders feel equally heard during the research process. This will lead to research that is more democratic and relevant to patients and the public.

We, as patients want to know if research doesn’t meet its primary, statistical endpoint is it the intervention, the research methodology and/or medication etc that was ineffective or the way we chose to measure it? 

* Integrity, Value and Quality taken from Alice Biggane’s research https://researchinvolvement.biomedcentral.com/track/pdf/10.1186/s40900-019-0170-2.pdf

If you are interest in learning more, the following sources might be helpful

Use My Data is a movement of patients, carers and relatives promoting the benefits of sharing data.  

HDR UK Voices – a network of Patient & Public Involvement with Health Data Research UK

Podcasts about numbers and risk with the statistician, author and broadcaster