My First Blog Post

New Blog Site for

Derek C Stewart!

Be yourself; Everyone else is already taken.

— Oscar Wilde.

This is the first post on my new blog. I’m just getting this new blog going, so stay tuned for more. Subscribe below to get notified when I post new updates.

First of all – I hope everyone is staying as safe as possible, keeping well and being as kind as we can be. I am taking the view that if I am to be isolated I might as well learn something new!

  1. Using WordPress as my blog site
  2. Learning Gaelic from Duolingo

Like everything new, it all feels a bit strange so I am just taking it step at a time.

Trial Methodology – through a photographic lens

Written on behalf of the Health Research Board – Trial Methodology Research Network, Ireland (HRB TMRN)* in support of the Medical Research Council + National Institute for Health Research Trials Methodology Research Partnership (MRC-NIHR TMRP).

Trials Methodology Research, what does it do and 

why is Patient, Public Involvement important?

Over the past few years, I have become increasingly involved with Trials Methodology Research. 

As a result, I am more certain than ever that the experiences, voices and insights of the public and patients are both necessary and essential with this type of research activity. To achieve this dialogue we need to be present at meetings, in discussions, attend conferences and see the activity mentioned in publications. Involvement with trial methodologists has the great potential to inform, influence and shape the way that the actual research methods are made better for patient care.

This relationship can bring about improvements in the actual studies by making trials more efficient, improving the experience of taking part and delivering research as well as speedier results. It is this form of transformational change to the research processes that is in all our interest. Ensuring that the modernisation of the methods are needed, relevant and acceptable becomes a key function of the public and patient involvement. 

However, despite trial methodology sounding a bit daunting, a bit out of our ken, a little bit academic – my experience has been almost entirely positive, informative and enjoyable. These methodologists or triallists as they are often called are a welcoming bunch. For the most part they seem comfortable in knowing and accepting what they don’t know. Although we enter the discussion through different doors we find that we are often in the same place of wanting to find some answers.

It then becomes about what we all don’t know about issues such as recruitment, retention, rapid reviews, statistics, outcomes, adaptive studies, etc. It is about applying this common lens of working together whilst accepting our different starting points that helps each other understand the picture in front of us.

I may jokingly say, at times ‘my head hurts’ but that is mainly because of the detail of discussion, the precision of language but given time, I get there. The shift is that, it is not about me ‘the patient’ – it could be about any patients or not even patients. It is not necessarily about ‘taking part in a study’. It is about the methods of research being used. We are standing apart and looking at a bigger picture. But it is an interesting panorama.

How do I approach being involved with those in Trial Methodology?

I think that I can best describe this relationship, as opposed to working with clinical researchers through the metaphor of photography. Trial methodology looks through a quite specific form of lens and from a different angle.

As a former teacher using drama for learning, I would often begin by thinking about who the people in the story are most like – the phrase used in drama is ‘in the company of others’. It is a means of considering the roles that the pupils might take on and with whom they could be connnected. 

If I was inviting young people to journey to the New World in a sailing ship then they would be in the company of explorers, travellers, adventurers. It would help me think of objects we might use – baggage, letters home, diaries and maps. These is turn would symbolically help to build belief.

It would also help identify the other people: those who have to carry the equipment, the botanists who might go along; the sailors tasked with getting them there – each providing different perspectives, possible starting points for different lessons as a means of looking at things from different angles. It would help me think of the questions they might have, the phrases I might use to deepen the experience and the consider settings to add tension – the unknown, the dangers, the opportunities.

When we look for these parallels and divergences, we can better understand what they do and consider some of their challenges, to gather other viewpoints, gain insights into how they might have felt and developed a more thorough understanding of their experiences.

As we move from our personal experience of ill health we hear from other patients and carers – this leads to us asking more informed questions.

Research as Photography

In this same way, we might think of RESEARCHERS as being ‘in the company of photographers’ (taking a number of images or snapshots of people taking part in the same experience at particular moments in time). This can be helpful for us as patients and members of public. It places research in a more understandable context. It helps us think of their world in a familiar way (Almost everyone has taken a photo at some point). 

Photographers want the best and most appropriate images (some with the latest cameras and others with what is available). 

Methodologists as Research Technicians

With this in mind, it is possible to view Trials Methodologists as being ‘in the company of those improving the process of photography’ (modernising the camera, improving the lens and shutter speeds, looking at how to take better pictures, thinking about lighting and tints, making photography available for more people). 

Trial Methodologists are the specialists, the technicians, the artisans, the experts in specific areas. They are changing and transforming the way we plan and do studies, collect the evidence, determine outcomes and think about how to transform the method.

Evidenced Based Research Methods

Trial Methodology Research is therefore about gathering the evidence that shows that these changes are worthwhile. It is about trials and other well-designed studies that set out to ask the most relevant and appropriate questions that will help transform the research methods that might lead to better health.

It was a patient, who became a statistician, that questioned the way many doctors carried out their research and is seen as an elder of the modern randomised controlled trial for healthcare. Austin Bradford Hill wanted to study medicine but a period of tuberculosis meant that he took up economics and became involved with statistics instead. He established many of the statistical aspects of trials that we see today to ensure sufficient numbers, control groups etc. 

Perhaps, this is one of the first examples of patient involvement. However, we don’t necessarily need to have been a patient though it can provide a useful experience to drive change. It is fundamentally about bringing a fresh pair of eyes yet a patient experience perhaps brings the particular sharpness to the focus.

The Finer Details

As the methodologists delve in complex fine detail, our other key role as patient/public, becomes about finding ways of translating this into clear language, pictures and diagrams. 

This is, for the most part, not about our illness or any treatment. It is our understanding as a patient or member of the public that we bring to the table (i.e. we didn’t enter through the door marked ‘Research Career This Way’).

It is the insights we have gained about health and social care settings. It is our knowledge of how to find, approach and involve people in research as active partners and participants in a study. It is those other life experiences that guide our observations, advice and comments. These become the more refined understanding and wisdom brought by many experienced patient advocates. 

Involvement with research methodologists is in many respects similar to the involvement with a laboratory-based researcher. We don’t need (or necessarily want) to understand the detail of the how they are going to alter cell mutation, know about the complex processes they will use and how it might eventually be turned into a treatment for a specific disease. It is again about the big picture, making connections and the fine detail gained from our knowledge.

The lab-based researcher finds it motivating to meet people affected by the condition they are studying; They find it useful to consider whether the medicine might be best tested in primary or secondary care. They see the need to explain their work in ways that is understandable. 

It is always worth remembering that many of those who will review research proposals to decide whether it should be funded are not themselves specialists in the specifics of research methodologies. 

Our role, as patients and the public, is to ask these researchers to explain why this might be valuable and what difference it might make. The opportunity is that we learn more about these fine details and develop more precise questions.

From a single photo, through family albums to social media

My family have a single photograph, we believe, of my great, great grandfather. It is small and printed on a metal plate taken sometime in the the 19th Century. We have collections in albums of homes, house and occasions.

Today, we all have probably thousands of photographs of the family, available on phones, posted on social media, sent as attachments, edited and altered using easily accessible apps. It is a more universal, open and accessible, as is research.

And yet

I still have no real understanding of how a smartphone camera actually works and nor do I really want to. Similarly, I don’t understand the detail in trial methodology. I do, however, know how to take pictures, edit them, post them and the technicians need that information, those insights and learn.

So, how do we encourage other patients and members of the public to become actively involved in aspects of health and care research methods to improve outcomes? Equally how do we encourage trial methodologists to open the doors to our involvement?

Before, beside and beyond – (part 2)

This post is based on a Workshop Presentation for the Health Research Charities Ireland (HRCI) – Shared Learning Group on 23rd February 2022. Please look out for the Tweetchat on 9th March 1900-200hrs (GMT). The before, beside and beyond refers to that health research that happens in labs, through molecular microscopes, on computers with pre or non-clinical studies.

Patient, public involvement (PPI) with this landscapes requires a little more thought and preparation. Many aspects are familiar yet others present some challenges

Some SIMILARITIES and CHALLENGES for involving patients and/or the public

Patient, public involvement with pre/non-clinical research still means meeting researchers, taking part in discussions, reading papers, emails and commenting on proposals but it is less about our personal experience. It is like taking a side step.

Involvement is still about providing a public and/or patient perspective, offering opinions on relevance, advising on and suggesting clearer language and bringing a reality check. This then becomes more about helping people understand their role and comprehend how they can contribute.

The challenges, of course, are that it can be more complex, complicated and involving a very detailed nature of research so how do we help people join in? 

It may feel as if there is less to contribute so how might we giving confidence?

Greater time may be required to tune-in, absorb what is required of the involvement so what support should we offerThe longer timescale often means less frequent meetings so what can we do to keep-in-touch?

However, the opportunity to learn about research is immense. Through my own involvement in meetings such as these, I ask better questions.

SETTING the SCENE, the TASK and the ASK

It appears that we might like to consider that it is the context, content and conduct of non-clinical research that separates it from involvement with clinical research.

Setting the Scene (context) – the settings and surroundings of non-clinical research are often quite different from the familiar clinical settings of most people. The places and the work researchers do are often separate from the standard patient pathways. They may have little or no actual contact with patients.

Yet, the work being done and where it takes places can be aspects of curiosity. Harvey’s Gang began because a young boy asked what happened to the blood sample they took. 

These can be of great interest and revelation to the public whilst also appearing slightly foreboding. 

I was rather disappointed to discover that the heralded process of ‘study randomisation’ was in reality two people entering data on a computer. They were very pleasant and the computers were great but I was hoping for a lottery tumbler. 

It may be difficult with public involvement to actually visit the laboratory, the computer suites and/or the tissue banks. There may even be closed laboratories yet it is possible to take pictures or a short film clip. Meeting may take place in a University setting rather than the NHS.

Scientific researchers might like to consider looking out for any You Tube clips, animations or presentations by themselves or colleagues that might help explain what they do.

Public partners might like to consider can think of groups, online communities that might welcome a talk, a tour and presentation.

Describing the Task (content) – The research may be more scientific, going into the detail of medicine development or tissue sampling, so the content might be quite complicated. It is, however, important to remember that public involvement is not about fully knowing the science but to encourage greater relevance, clearer language and better understanding.

Non-clinical researchers might like to give thought to examples and metaphors. It is helpful to be clear about the purpose – grounding in reality – a series of chats and conversations about your work.

Public partners might consider examples from their life experiences that explain the science. They may make useful suggestions to the language in lay summaries and other information about the research.

What is the Ask? (conduct) – This is about the actual what, when, where and how the involvement gets done. 

It needs some basic information about the study which is not just the protocolThe way we may be more spread out, have numerous failures, take time; quite specific and less formal meetings; worse things happened on the floor of the steel works in Sheffield – Karen Wilman

It may just start with a simple conversation, with a catch up in three months time, with an email update (even when little or nothing has developed). 

The catch up can be a chance to think about what you have learned from meeting each other and whether or how you have used that knowledge. It might even just be about how you have managed during Covid. 

Put a note in your diaries for a time ahead to contact each other for a further catch up; add reminders on certain dates – annual get together on date submission of funding application, etc.

Question for Workshop: Think about these in terms of a Rough Guide to a City or Country. What might you need to include in yours?

PEOPLE AND PLACES TO SEE

I have chowen a few examples that illustrate a range of involvement happening before, beside and beyond patient experience.

Dr Emma Dorris, emphasises the contribution involvement makes to Quality & Clarity, Needs and Value

https://sciencetrends.com/bridging-the-gap-between-research-and-impact-public-and-patient-involvement-in-health-research/

Parkinson’s UK, Alzheimer’s Society and University College London Biomedical Research Centre have produced ‘A Practical Guide to Patient and Public Involvement in lab-based research’ – mentions that involvement provides reassurance and motivation to continue, help to think differently and to raise new questions

https://sites.google.com/parkinsons.org.uk/ppi-in-lab-based-research

Bella Starling and Jemma Tanswell look at social change and innovative ways re-imaginging the positive assets that diverse young people bring to science and health research

https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-018-0122-2

Consumer buddies in Australia provide insight into how their research can make a difference in the community

https://www.wehi.edu.au/research-research-fields/clinical-translation/consumers-and-research

Alice Biggane, et al talks about Involvement being key to research Integrity, Value and Quality in her paper about Methodological Research

Lynn Laidlaw, Irene Soulsby, Bea Goulão and myself – Figuring it Out blog post talks about involvement grounding statistical research in reality, helping it to make sense and motivating the work

Luca Marciani Involving children and young people in research from inception of a novel medical device to a multi -centre trial – showed the development of a mutually beneficial partnership, enabling genuine knowledge exchange

What might public good look like for the best research?

As we read through these papers and others, it is possible to identify certain themes that are inherent in why we need to involve patients and the public in this research landscape. Here are some themes that I have noticed…

  • Integrity & Trust – for high quality scientific research 
  • Quality & Clarity – in the language and communication of proposals 
  • Needs & Value – in terms of relevance and appropriateness of the research 
  • Grounding research – in reality and patient experience
  • Affirmation & Reassurance – that it is the ‘right’ thing to be doing
  • Encouragement & Motivation – for researchers to carry on
  • Learning & Development – about research for public partners
  • Different thinking – fresh ideas and new questions

WHERE MIGHT YOU BEGIN

Some suggestions for researchers

  • Perhaps start with a couple of people who are curious, interested and willing to help
  • Seek out some others who might like to get involved and invite them to meet for a chat about your area of research
  • Reflect on learning and look at ways of communicating with wider networks
  • Identify specific things that might/would benefit from patient experience, the patient/public voice and their presence 
  • Ask yourselves what you might do next and how you be even more open, to engage and involve the public

The Challenge is to find ways of bringing more people in whilst extending the breadth and depth of the discussions. The danger is a few people assimilate and exclude others.

Before, beside and beyond (part 1)

When we look at involving people with all that non/pre-clinical, lab-based, biomedical, methodological research it is worth considering that this is simply the study of health that happens before, beside and beyond patient/carer experience.

So, what does Patient, Public Involvement look like with this research landscape?

Yet, it precisely because of patient/carer need and patient experience that it is funded so it is in our interest to be involved. It is a landscape where patient, public involvement is increasingly taking place and the workshop where I presented these thoughts helped drive these posts.

This post is based on a Workshop Presentation for the Health Research Charities Ireland (HRCI) – Shared Learning Group on 23rd February 2022. Please check out Twitter for the Tweetchat using hashtag #Involvement_Preclinical

 A Necessary Connect

Sir Paul Nurse – Director of The Francis Crick Institute

The connection between pre-clinical, lab-based research with patient need is of growing importance and value. It has become evident throughout the Covid-19 pandemic that this is a necessary connection that is also required across other health issues to help make greater meaning. 

Informing, engaging and actively involving patients and the public is a means of connection – making these bonds real, tangible and practically valuable for biomedical research. Active involvement, where genuine partnerships are created and developed, has the additional potential to increase understanding amongst patients and the public in science, engender trust in evidence and challenge fake news at a time of such rapid communication through digital technology. 

This is fundamentally about our science, our clinical care and the concept of public good being research that is relevant, meaningful and applicable for people in today’s world. It is learning about the developments and changes in science, data and IT. The more open and transparent research becomes the greater the potential for improving health.

It should be by necessity a joint endeavour and an opportunity for mutual learning. It should not just be about going through the motions of engagement and involvement. It is about having clarity of purpose and meaning to improve this research.

Patient and public involvement and engagement (PPIE) has the means of increasing and strengthening that connection with basic science as well as the reciprocal development of a greater understanding of biomedical research. It is in all our interests. 

POINTS OF VIEW

As I begin to unpick the features and benefits of patient and public involvement in pre-clinical and lab-based research, it is worth pausing to reflect upon the world of clinical research

Clinical Research is closely related to our health experiences. It allows us to find ways in which we, as patient advocates, might compare, contrast and use our personal encounters to assist the research teams. We draw upon our direct knowledge to understand, reflect and strengthen those connections spoken about by the Paul Nurse, the Nobel Prize winner. 

If we took pictures of Clinical Research on our smartphones…. it is likely to be a series of portrait photos showing the participant and research nurse interactions – explaining the study, asking questions about what is required, signing the consent form, taking part in the trial, sending and the participants receiving the results.

These portrait photos have an individual quality with a distinctive and particular style and form. There is a unique agreement and commitment. It is the willingness, the volunteering and the altruism of trial participation. It is for the most part the researchers involved with people in clinics and healthcare settings. It has a personal feel.

In comparison, the lab-based experience invites us to consider photography with a narrower focus and a broader more general appeal – we are altering both the lens and the perspective. It becomes more indirect and may feel initially less personal.

CHANGING LENS & PERSPECTIVE

The LENS of non-clinical research becomes adjusted to the close up – the microscopic or even molecular – (looking at human tissue, chemical formula, Petrie dishes). Or we are looking at research data in minute detail.

The PERSPECTIVE turns the camera around to landscape mode – to a wider panorama (lookinga disease, a condition or a population – (about chemistry, physics, bioengineering, etc). 

In terms of Covid it means looking at the complicated patient experiences alongside the complexity of the science and the elaborate development surrounding vaccines and medicines. It is bridging these connections that helps us all understand. 

You may like to consider whether this analogy of photography and cameras help us all to be clearer? Does it help to make a mental picture and connection to enable us, as patients and members of the public to navigate our way? Might it help lab- based researchers find a way of differentiating between their work and clinical researchers? If you don’t use photography as the metaphor, what else might you use?

Involvement with pre-clinical research is another step in learning rather than necessarily being some different type of involvement. 

Biomedical research is an interesting place to be for patients and the public as it develops our understanding of scientific research. Equally, our contributions can also help give purpose and reason for those working in this research.

So, what is actually different about involving patients and the public in the landscape of before, beside and beyond patient experience? Click here to read Part 2

You might also be interested in this updated post listing some of the examples of involvement in this landscape https://involveddotblog.wordpress.com/2022/01/18/involving-patients-and-public-with-health-research-in-labs-science-numbers-and-methods/(opens in a new tab)

An introductory blog post can also be found on the HRCI website: https://hrci.ie/guest-blog/

Involving patients and public with health research in labs, science, numbers and methods.

The research that regularly takes place before, beside and beyond patients and carers

#Involvement_Preclinical

Involving Patient, Families and Public in Pre-clinical or Non-clinical Research – Useful Sources of Information – originally posted Friday, 12 October 2018 and reposted in 2022

The idea of Patient and Public Involvement (PPI) in research is fairly clear when you meet, talk with and consult with patients. It can be perceived as more challenging when the research is done at a distance yet it is far from impossible.


Here are some articles, papers and websites that Bec Hanley and I found helpful in thinking about the issues around involving people in the laboratory, decontamination, animal and data research studies – ie pre-clinical or non-clinical research.


These were initially prepared for a Workshop with those working and affected by Creutzfeldt-Jacob Disease (CJD) hosted by the National Institute for Health Research – Central Commissioning Facility, Policy Research Programme,  (NIHR CCF PRP) in Twickenham. We are grateful for their support and to all those we interviewed and subsequently met on the day.


A number of the references were sourced through a Twitter request using #Involvement_Preclinical  so thanks to  @ERDorris @Katherine_JLA @_nratcliffe@bellastarling @gailfdavies @KristinaStaley2  @JulieEBayley and many others for retweets.

LATEST NEWS – Patient engagement in preclinical laboratory research: A scoping review – https://www.sciencedirect.com/science/article/pii/S2352396421002772 Many thanks to @StuartGNicholl1 for bringing this to attention after recent twitter posts.


The SOURCES are grouped into categories for ease of searching:

Patient and Public Involvement – Pre-clinical

Involving Patients in Pre-clinical Research This is a helpful article in the BMJ Open Science Blog by Katherine Cowan, an independent consultant and a Senior Adviser to the James Lind Alliance. 

Bridging The Gap Between Research And Impact: Public And Patient Involvement In Health Research Dr Emma Dorris makes the case for involving patients and the public as being about… Quality & Clarity, Needs and Value. 

Involving People in Laboratory Based Research This is a useful discussion paper from the Shared Learning Group on Involvement (Research) which brings together many of those working in engagement and involvement in the charity sector. It includes a list of papers about PPI in lab-based research. 


Facilitating Patient and Public Involvement in basic and preclinical health research. Paper by James Maccarthy, Suzanne Guerin, Anthony G Wilson, Emma Dorris


Involving Patients in Parkinson’s UK researchUPDATED GUIDANCEalong with other excellent resources and information from lab based researchers. Good You Tube video as well.

Diversifying audiences and producers of public involvement in scientific research: the AudioLab – Great example from Bella Starling and Jemma Tanswell about how we might reach out and merge engagement with involvement

Involving children and young people in research from inception of a novel medical device to a multi -centre trial – Luca Marciani and others.


Involving Children and Young People – Harvey’s Gang is a great example of helping young people to understand what happens elsewhere in a hospital eg with blood tests 

Autistica UK 
has developed a research strategy with the whole community
PPI Strategy for NIHR Health Protection Research Units – The Health Care Associated Infections (HCAI) and Antimicrobial Resistance (AMR) at Imperial have produced a Strategy for Involvement & Engagement


Involving People in Research – This Australian website has some good examples of involvement in health data – patient/family involvement is described here as ‘consumer’

For more general information, please go to NIHR Involve Briefing Notes for Researchers

Animal Research

Transparency and Public Involvement in Animal Research Paper on how patient involvement might increase openness 


The Animal Research Nexus This network provides information about understanding about animal research. They have recently produced anexcellent set of resources including You Tube clips

Patients in Research (in general)

Clarifying the roles of patients in research A BMJ Editorial on meaningful patient partnerships in research
Innovative Medicines Initiative -A guide to Involvement in EU funded research

Public Engagement 

Meet the Researchers – A simple yet effective means of making ‘engagement’ work for researchers and public Thanks @jonathanbooteThe public-engaged scientists: Motivations, enablers and barriersPaper by: Cerrato, SimonaDaelli, ValentinaPertot, HelenaPuccioni, Olga


Doing Public Dialogue The Research Councils UK worked with Involve who specialise in public engagement 
Patient Advocates In America, the CJD Foundation has created CJD Advocates
Sense About Science Public Engagement Guide that includes information on actively involving people
The 2 major supports in Public Engagement are National Coordinating Centre for Public Engagement – good source of information
The Wellcome Trust– produced a new strategy for engagement

Industry

Patient Engagement and Involvement in Research and DevelopmentAn article by Pfizer on the new opportunities for patient engagement
Improving Patient Involvement in the Drug Development Process Article on value of social media to engage patients 

Article in Pharma Phorumhttps://pharmaphorum.com/?p=53404
Engaging Patients In Clinical Trials With Alan Thomas & Juliet MoritzExcellent podcast about why the patient voice is important in trial development

Impact

Research Impact– Interesting and valuable resources from Dr Julie Bayley(https://juliebayley.blog)

Why Impact matters in User Involvement – Excellent resource from NPC

The National PPI Standards

Information about the PPI Standards 

….AND MORE  (I will continue to add and then categorise later)

From Canada @CAR_PSP via twitter on Involvement in Anesthesia Research

Count Me In – A great example of how patients can help with encouraging PARTICIPATION in a Study using a Vimeo clip Thanks @MBCNbuzz
Involvement in Evidence Synthesis – Wonderful example of how involving patients, families and public can make a difference in complex and complicated areas of research. Thanks @CochraneUK

Arthritis Research Conference in Ireland which included science, treatments and care with patients attending https://www.ucd.ie/conway/engagement/newsopinion/2018/togetherisbettertransformingarthritisresearchinireland/

Role Descriptions for Patient, Public Involvement

A Help or a Hinderance – Too Little, Too Much?

I recently received a ‘role description’ that might be helpful for a group I was invited to attend. The meetings were to take place every couple of months – each lasting an hour and a half. 

The ‘role description’ being proposed, for the patient partner, was 6 pages in length!

I thought – Just how much do I need to know? I began to ask – Am I applying for employment? I felt that, if I were new to this, I might have been put off joining the meeting.

The purpose of this blog post is to question whether such role descriptions, outlines or person specifications or even terms of reference have now become over long and too much. Are they more limiting and excluding in nature? Would it make me want to get involved?

This trend to produce extensive outlines is worrying as these were initially intended to be short, helpful, constructive and to aid inclusion.

At the heart of this, are some fundamental questions that need to be asked: Is everyone else who is asked to attend the meeting presented with a role profile and agreeing to any terms of reference? If not – why not? Why is the patient/member of the public being singled out? Where is the basic equality – if we are being seen as so different that we need everything explained?

A Selection Process?

The danger, for me, is that these outlines get used to identify and select people who match the descriptions as in most employment interviews. It suggests that I need to have these skills, knowledge and experiences. It risks people being chosen to fit in who likely to come a similar background, know about these things and similar to those already in attendance. 

It is our personal experience that matters. We are not there to fit in! We are there, to question, to focus the meeting on the purpose of improving patient care, a reminder to work together constructively. I like the quote – “Get into trouble – good trouble!” By the late US Senator John Lewis. I also use the phrase – it is good to disagree but unacceptable to be disagreeable.

When, with the Cancer Consumer Liaison Group, we began to put together such descriptions they were less than a page with accompanying opportunities of some further chats, explanations and workshops. The actual terms of reference for the group were just four simple but extremely well crafted lines. 

A Prompt for Conversation?

The role description was developed more as an aid for an initial telephone conversation and only sent out afterwards (we wanted to encourage people to join not put them off).

The intention and purpose was mainly about helping the individual consider what they were getting involved with, what we were trying to achieve, talk about what they might need and a little bit about the meeting. In essence, a bit of background and foreground. 

Our aim, in cancer, was to use our patient/carer experience to achieve more relevant and improved diagnosis, treatment and care. It was never really about patient and public involvement per se. 

It has always been about making a difference more than policies and procedures. We viewed the venture through models of change – both cultural and behavioural.

Function, Support, Focus and Reflection 

I will state that role descriptions can be useful in many ways in helping to…

  • understand the role and make clear the purpose of the meeting (FUNCTION)
  • identify areas where we may want or need further information or advice (SUPPORT)
  • relate our health experiences to consideration of the meetings (FOCUS)
  • review as a means of understanding and asking better questions (REFLECTION)

These are all ‘helping to’ rather being than explicit and prescriptive demands and requirements. The lengthier descriptions and details may be useful aids for those supporting and enabling someone to take on the role. 

They are useful ‘tuning in’ activities – so that we understand our task and the reasons behind the meeting. 

Not So Long Ago

Role descriptions were developed by asking people what they might have liked to have known at the beginning of their involvement. There were never intended to be a handout about everything you needed to know. They should be about useful information, essentials that might be required, prompts for discussion.

You wouldn’t tell someone going to France that they have to learn all the words from the Larousse Dictionary before the visit. You wouldn’t expect them to know the history and geography of the country. We might, however, suggest taking a simple phrase book, saying Bonjour and changing their currency into Euros. 

Twenty odd years ago, if I had been presented with some of these recent role descriptions, I would have probably felt that I couldn’t contribute in any meaningful way. I would have run away and missed out on meeting so many interesting people and learning from health research.  

We have to remember that we bring knowledge from our direct personal experiences. The understanding we need and gain from our involvement is just more experiential learning where we find out things as we need them. It is neither didactic nor linear. It expands our understanding tans helps us ask even more insightful questions. 

Person First

Start with the person – ask them what they would like to know and how they would like to receive the information. Some will ask nothing, others a few questions and a few might say they want to read everything available. Some will want to talk through the information, some will like to be redirected to different sources, animations or YouTube clips. Some will want to sit and observe the meeting.

There will, of course, be certain essentials that must be covered.

This approach enables the individual the choice as to whether to get involved and make the decisions about what they might need to know.

As you explore the purpose of the meeting invite them to consider transferring skills from other experiences – times when they have helped bring people together to find solutions, reminded people about common goals; intervened when others have different opinions.  

And finally 

In terms of the theme of mutual learning, it is worth exploring and explaining what patients and the public might gain from learning about research, the research methods, the science, health services and/or about how we make a difference. 

In all of this, I am not suggesting that we don’t need role outlines and terms of reference, even if it just for us in patient & public involvement. I am asking that we think more carefully about using them with greater awareness of inclusion and supporting those whose voices are least heard. 

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

Are we receiving?

In my Inaugural Address as Honorary Professor at NUI Galway, I expressed my interest in the concept of mutual learning as a vital component of actively involving patients and the public with health and social care research. This post is intended to continue that dialogue.

At the very heart of involving patients and/or the public in health and social care is the unique perspective that those with a different lived experience can bring to the decisions that need to be made. Involving the most appropriate individuals and groups provides insights that might be missed; enhances the dialogue and enriches the opportunities of learning from each other. When Patient, Public Involvement goes well – it feels right!

As a former teacher, using drama as a learning medium, I was often asking young people to take on different roles to looking to explore other people’s views and feelings. 

One of the theoretical texts we used was Bloom’s Taxonomy, particularly the affective domain. I must admit that I had almost forgotten about this until a recent conversation with Maureen Smith and others through the Priority III study The results from this are now available.

As a former teacher, using drama as a learning medium, I was often asking young people to take on different roles to looking to explore other people’s views and feelings. 

One of the theoretical texts we used was Bloom’s Taxonomy, particularly the affective domain. I must admit that I had almost forgotten about this until a recent conversation with Maureen Smith and others through the Priority III study (the results from this are due on 22nd July 2021).

Benjamin Bloom and colleagues, educational psychologists, were interested in finding a way of classifying learning objectives. These are known as Bloom’s Taxonomies and it is the ‘Affective Domain’ dealing with feelings, emotions and attitudes that I want to explore.

Bloom’s other taxonomies cover the cognitive and psychomotor domains. Research, of course, is very much a cognitive exercise with the need for objectivity, fairness and precision. The doing of research itself may often use psychomotor skills through new treatments and medicines. It is therefore worth exploring these other taxonomies. There are some criticisms of these taxonomies but they do provide a means of looking at things differently.

The classifications within the affective domain are about feelings, emotions and attitudes. These lie at the heart of our involvement with research because they determine the aspects of quality – it is the personal, the intuitive/ instinctive responses that we bring that can often make the difference in a discussion. It is our knowledge gained from those feelings.

Bloom’s classifications are receiving, responding, valuing, organisation and internalising. The descriptions may match closely with many aspects of why and how we go about patient and/or public involvement.

Involvement with research is about knowing and understanding the actual like experiences of those who are intended to benefit from the proposed study to address what might be the potential unintended consequences, for example – making decisions about people without thinking through what this means or might mean for them.

RECEIVING

This is what Bloom describes as receiving. It is what what we patients want to see – that the researchers are willing to seek out, respect and listen to our experiences.

It was not always the case as we were seen as the ‘research subject’ – someone to be done to!

Receiving reminds us to consider aspects of equality and diversity. It also touches on what we as patient learn from the involvement and even the realities of paying for our time and the support being offered.

RESPONDING

Thinking and acting upon these perspectives, comments, advice and/or recommendations are what Bloom describes as responding. These are the practical changes we are keen to see absorbed within the study to ensure that participants are actively involved in a study and informed about the results.

VALUING

Bloom’s third classification is valuing – this is the difference between the mere tokenism of having one or two patients on a committee to there being real change. It is more than just acknowledging and saying thank you. It is about completing on the tasks. There is little point in being involved if people’s thinking hasn’t altered.

ORGANISING

The fourth area that Bloom identified is organisating – comparing and contrasting opinions. As we offer our perspectives from a personal experience, together we need to understand the research viewpoint and reach acceptable decisions. 

It is also that shift from involvement offering practical advice to the greater openness and joint endeavour and the mutual benefits that can be accrued.

It has seemed to me that some research teams just see involving patients and the public as an essential quality measure of good research. They say ‘Why wouldn’t you have these conversations?’ – they just get it!

CHARACTERISING

Bloom describes this as characterising where we are internalising the changing of attitudes and future behaviours – a transformation of thinking and practice.

This pyramid of thinking reminds us that this is about changing the research culture and infrastructure to become more transparent and open. It moves us beyond the transactional aspects of commenting on a patient information leaflet.

In Summary

I am not suggesting that we suddenly start using Bloom’s Taxonomy for all Patient and Public Involvement but that for some people these classifications might help to better understand the endeavours in which we embark.

Equally for some researchers this may offer a means of explaining the additional value that can be gained in the search for mutual learning and respect.

For me, it reinforces the notion that this is more about changing behaviours than ‘doing PPI’. This recent article in BMJ Open reminds us that this is much about Changing Relationships https://bmjopen.bmj.com/content/11/7/e045520

It is how we receive from each other, what we learn from these new experiences of working together and identify the transformations that are taking place.

Click to read the Inaugural Lecture https://involveddotblog.wordpress.com/2021/07/22/a-place-for-learning/

Names and other thoughts

Patients, Consumers, Carers, Public – PPI/PPIE

In a recent Twitter discussion in May 2021 – Jane Thompson @janethompsonadv asked a question about when when the term ‘consumer’ changed towards patient, public involvement. Here are my recollections and reflections which I will add to the previous history notes. This blog was initially called ‘What’s in a Name?’ But that had been used in an article by Cochrane whom I also forgot to mention in my rush to write.

In about 2001, in the very early years of the National Cancer Research Institute Consumer Liaison Group (NCRI CLG), I was giving a talk at a Conference. 

A questioner asked whether I liked the term ‘consumer’ for the Consumer Liaison Group (CLG) – the patient voice within cancer research in the UK. 

My reply was short and quite sharp – I stated that we were more interested in what we were doing rather than spending our time deciding on a different name. 

I caught sight of two senior people from the Department of Health R&D, who looked at each other and nodded their heads. 

Later, they indicated that they too would prefer us to get on with having the patient experience, voice and especially the presence at meetings, on groups and committees. They too wanted action.

The term ‘consumer’ was on the initial workshop documents to establish the CLG. 

The organisation that many of us know as INVOLVE was previously called Consumers in NHS Research. It was the central and only forum for discussion about advising on patient and public involvement in all health related research. 

We were merely, at that time, therefore using the same word so that we would be aligned with DH policy. It is also user by Cochrane with their Cochrane Consumer Network.

I do appreciate that words matter but so does the context of the time. Survival rates in cancer were extremely poor; only 4% of patients took part in research studies in cancer; there were long delays in referrals and for treatments. 

One of the few times that a cancer patient was given any choice was to volunteer to take part in a clinical trial. Treatment options were limited and most often given to us with little debate. In my own case, I felt as if I was fully part of the discussions around but this was not generally the case. See comments in previous blog post.

The CLG was also a small group of people who had had cancer. A few were seriously ill. The rest of us had no idea whether our cancers would return. Speed seemed of the essence. 

We all wanted to get on with informing, influencing and shaping the direction of cancer research. We were determined to be a present and active force in the new structures of the Network and the Institute (NCRN and NCRI) that were being established. We needed them to be patient focused. 

I would suggest that we have been and remain a positive and palpable force that has, with other groups such as the Independent Cancer Patient Voice, helped make significant improvements to cancer care through our involvement within the research community. 

In the UK, the term patient and public involvement has become more prevalent, sometimes with the addition of carer and occasionally with a suffix of engagement although these, meant to be more inclusive, resulted in just longer acronyms. 

At its worst, these became the dreadful acronyms of PPI or PCPIE. There is a danger that this use of the acronym, merely labels and boxes us as a separate activity rather than core to the principles and practices of good research. 

The differences between patients / public and the importance of purpose are examined in this recent article by Kristina Staley, Roger Wilson, Jim Elliott and myself – Who should I Involve?

INVOLVE chose to refer more to just Public Involvement (anyone know when this change occurred – my guess is around 2005?).

Another shift away from the word consumer was probably due to a separation from the ‘consumerism’ driven in the 1980s and 1990s.

The word  ‘consumer’ is still used within the National Cancer Research Institute though most other groups talk of patient and public involvement. One change has taken place as the Consumer Liaison Group is now the Consumer Forum.

In my rush to write these notes, following a fall, I had forgotten to add the reference to Cochrane but Twitter came to the rescue and brought to my attention this great post called What’s in a name? by Richard Morley and SarahChapman

Jonathan Boote on Twitter has also pointed out this 1999 article Who are you, who are we? by Alex Herxheimer and Heather Goodare

I hope that I have captured some of the background and changes but these are through my eyes and the mists of time. Any additional thoughts, corrections or amendments are most welcome. 

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