Wednesday, 17 October 2018

Patient Advisory Groups (Part 4) DEVELOPING PEOPLE

Developing People (Patient/Public Involvement Standard: Support and Learning)

- Being a member of a Patient Advisory Group may help research yet it is also an opportunity for learning and developing as a person - patients and researchers.

This is Part 4 in a series of articles about Patient Advisory Groups. You can read the other posts in the series by clicking on these links: Patient Advisory Groups (PAG) Part 1; From Story to Reflection - Part 2 ; Purpose and Plans - Part 3. The final article will look at how we record and report on the activity of a Patient Advisory Group: A Tale to Tell.


I have been a member of many Patient Advisory Groups. I am always amazed by people's willingness to give of their time to help improve research. I learn so much from listening to other's experiences, knowledge and skills whether as patients or researchers. I am even more pleased to see people grow and develop as individuals. This article, Empowered Patients, by Marie Ennis-O'Connor may be particularly helpful.

So far, in this series, I have spoken about making a difference to the research yet through our involvement experiences we invariably develop as people.  We obtain new knowledge, gain different understanding and even develop new skills.

We have the opportunity to obtain information relating to our own health, the current thinking about treatments, the latest research. For starters, we discover more about the way researchers work, the methods they use and the challenges they face. We find out more about science, medicines and the human body. We discover more about health reasons that brought us to the table.

Making Sense 

Members of Patient Advisory Groups might like to think about how we make sense of all the information we are being asked to consider. I have found it helpful to reflect by grouping the issues into different categories: 

  1. Our Condition or illness  - e.g. the causes, diagnosis, treatments, etc. 
  2. Current Research - e.g. the type, methods, approach, regulation, etc.
  3. The Science - e.g. the pathology, laboratory, genetics, medicines, etc.

This makes me think about the question or observation I might like to make in the meeting. You can choose your own categories to meet your needs.

There is NO necessity to formally learn these subjects. We pick up what we need in the same way we learn a few phrases on a visit to another country. Our presence in research land is to bring the patient voice to the table whilst reflecting on our experiences. It is, however, good a have a grasp about some of the issues, to raise our awareness and to gain knowledge. These help make our contributions more appropriate.

I have a much better understanding now of the complexity of getting research done and the complications around applying the findings in practice. I know of the developments of more targeted treatments and the greater precision these are intending to provide.

Personal Development

There is a further area that is about how all of this affects us on a personal level:

     4. Our Self - e.g. wellbeing, developing and coping 

I understand much more about my own wellbeing. I take much greater care about what I eat and keeping myself healthy. A health tracker has become a useful wearable addition to my life. As a consequence I have made fewer visits to my GP and take little or no medicine. 

All of this learning does not take place in the normal places of education. It takes place in the classroom of our experience and affects our feelings and emotions. I never imagined that I would become actively involved with clinicians and researchers - science was one of my weakest subjects at school. I therefore surprise myself at being so interested.

Just as we have the emotional ups and downs in reaction to our illness, so these responses are revisited when we attend meetings. These are elements of ‘fight’ or ‘flight’ where we want to take on the world or run screaming from the area.

It is worth thinking about how you might cope when something is said or done that might upset you. Members of a Nottingham Breast Cancer Research Patient Advisory Group suggested:
  • Distraction activity - thinking of something else, doodling on the papers
  • Counting to 10 and/or breathing slowly and deeply
  • Thinking of worse/ best scenarios and usually finding yourself in middle
  • Think through possible scenarios beforehand - what happens if and thinking of decision
  • Getting up and leaving the room for a few minutes
In reality, these moments are extremely rare in Advisory Group setting but they do occur. They are perfectly normal

The important fact is these moments reconnect us to our patient experience and remind us to think of those who might be asked to take part in a research study in question.

Learning by Experience

The learning itself takes place in a haphazard fashion depending on the people we meet.  It is not a linear course of instruction. It is referred to as experiential learning and David Kolb, the educationalist describes this as the difference between visiting a place rather than merely reading about it.

As an example, having attended a meeting of the Nottingham group yesterday, I realised that some of the activity involves basic science and pre-clinical work including animal testing. Some of the examples from last week's blog might be of interest and use.

I learned more about breast cancer and the treatments (condition), about the planned diagnostic tests (research) as well as how this is being targeted at specific cells (science). I found out about health economics (research). I also felt supported by hearing from the members about their experiences (self).

These, in turn, invite us to consider the purpose of our involvement with research and how we record and report this activity. It is the subject of the next blog post - A Tale to Tell (PPI Standard: (Communication)

Note: If you are new to Patient/Public Involvement in Research then this post provides a lot of background sources of information

Friday, 12 October 2018


Involving Patient, Families and Public in Pre-clinical or Non-clinical Research - Useful Sources of Information 

The idea of Patient and Public Involvement (PPI) in research is fairly clear when you 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 met on the day.

A number of the references were sourced through a Twitter request using 

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. 

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 research UPDATED GUIDANCE along with other excellent resources and information from lab based researchers. Good You Tube video as well.

Involvement in Dementia Research - Excellent series of articles and a paper by James Pickett and Matt Murray

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

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 an excellent 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 @jonathanboote

The Research Councils UK worked with Involve who specialise in public engagement 

Patient Advocates

Sense About Science 
A Public Engagement Guide that includes information on actively involving people

The 2 major supports in Public Engagement are 

The Wellcome Trust– produced a new strategy for engagement


Patient Engagement and Involvement in Research and Development
An 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 

Engaging Patients In Clinical Trials with Alan Thomas & Juliet Moritz
Excellent podcast about why the patient voice is important in trial development


Research Impact- Interesting and valuable resources from Dr Julie Bayley(

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 clipThanks @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

Saturday, 15 September 2018

Blog Posts in other places

I have been relatively quiet on my own blog recently but that doesn't mean I have been silent. I have just been posting stuff elsewhere...

What does the phrase 'Research Active' mean to you?

This post is on the BMJ website and can be accessed here

Join us on Sept 18th 2018 for a Tweetchat at 2000hrs (BST) on this topic.

The word DATA makes it sound a lot like numbers!

This post can be found on the NIHR website here

Patients and Research - Together

This article was for the Clinical & Contract Research Association Yearbook which was launched at the House of Lords in July 2018. My article is here.

Tuesday, 10 July 2018

Why do we, as patients, have to prove our worth?

Evidence of IMPACT is increasingly being mentioned when we talk about patient and public involvement.

But, why do we have to prove our worth? Why should we have to gather evidence to show the difference we have made? We don't expect the clinician, the statistician, the methodologist, the data manager to prove their worth in the research process. We don’t say - why are you here?

One of the first things most researchers do…is a literature review. They naturally want to find out what is known already. They often start with what is published in Peer Reviewed Journals. 

If there is NO mention of how patients and the public have been involved then in the reality of research there is NO Patient & Public Involvement. 

I exaggerate, but there is an element of truth that if there is no evidence then how do we know. The others, I mentioned have over years shown their value. We must do the same.

We make a real and tangible difference...

To Individual research studies
  • Enriching the reality of the research - the priorities, relevance, and value
  • Informing the design of the study - outcome measures, inclusion measures, Patient Information Leaflets
  • Improving the doing of the study - advice on where to promote and recruit, membership of trial management and even co-applicants
By talking about Research
  • Raising awareness about research in general through the Research Ambassadors initiative
  • Increasing access and provosinh more information about research 

For Patients, Public and Healthcare Organisations
  • By being Active in these changes
It is more than just making improvements to the research and doing studies.

It is about research under-pining and being a part of the normal patient pathway. My own story bears witness that the knowledge of research, experience of treatments and the patient discussing the options are the important elements.

It is about making a difference to the individual study and the researcher, the broader aspects of access and recruitment as well as the general direction of intertwining high quality research as part of good clinical practice.

We are seeing the movement of research from academia, though clinical care to being a serious patient asset.

We, as patients, should expect, seek and maybe sometimes demand more. 

Our questions should be about the research, the evidence as well as being able to participate. Some of the KEY Questions are highlighted in the box. 

Are we making a difference?

The following notes are based on a Workshop in Coventry - Impact is not just about counting things. We need the evidence in story form, photographs and videos about...

  • Before and after Patient Informational Leaflets - examples of the how language changes from medical to plain English, how the layout of a leaflet alters, the visual diagrams that have been added, maybe even the use of other media
  • Simple personal diaries asking people's expectations of being involved at the beginning of a project then at some intervals
  • Reporting of the why, what, how of the Involvement with illustrative instances of improvements
  • Preparing a simple evaluation sheet with grades to note information, knowledge, experience, confidence
  • Making a case study of a person or group's involvement
  • Booklets on the Involvement - CRUK
  • Social media summary around a particular discussion 

We must also ensure that the story of the involvement is mentioned in dissemination, on posters and in publications. 

Many of these changes are about the day to day PRACTICE yet we should also be looking at the shift in CULTURE (people's attitudes) and the CLIMATE (people's behaviours) 

We must see the Patients Included accreditation for every event.

Sunday, 8 July 2018

What might IMPACT look like?

What might IMPACT look like?
Please also check out this page as well

This is the question I posed at a workshop at 

Coventry and Warwickshire University Hospitals Research and Development Summit 2018 

#rdsummit2018 @UHCW_RandD @nhsuhcw

The workshop was publicised as highly interactive and informative. Hopefully is was fun and safe learning with colleagues.


Participants were invited to form small groups. Each group was given a card providing a separate scenario yet with the same question. Each card reflected different aspects of involvement: planning an open day, advising on patient info leaflets, commenting on outcome measures, membership of a trial management group.

The question was simple: What difference might this make?

The responses varied from the principled to the practical. They speak about being more patient friendly and about making a real difference.

It is interesting how we have all become better at explaining the why, the what and even the how of actively involving the public in research as the responses below illustrate.

The second task was about capturing the IMPACT. By some stroke of fortune, I had just attended the workshop led by @julieEbayley and got this lovely quote: “IMPACT is the provable benefits of research in the real world.

The purpose of the second task was to invite the participants to think about what schools refer to as primary and secondary evidence! In other words how can we demonstrate the difference we have made.

The groups came up with some great examples of the difference involvement might make and the ways in which we might measure the impact.

Involvement in Priority Setting

The difference of involving patient/public in priority setting might be that the focus and direction of travel will change from academic priorities to public. By including patients we might increase public understanding and in turn gives us chance to inform people on benefits for patients.
Patient involvement needs to be done and to show a demonstrable difference.

The IMPACT might be measured by having…

A summary of ideas offered by patients/public and how the priorities changed
An evaluation of how priorities have shifted over time from academic to public ownership

Involvement about Patient Information Leaflets

The difference of involving patient/public might be that our leaflets are more Patient Friendly. We might make less assumptions.  It allows researchers to understand what the patient needs e.g. Is it acceptable to the patient?; Does it deliver the right information?  The answers might help validate the research and help with answering questions at ethical review.

The IMPACT might be measured by showing…

The before and after versions of the leaflet
Examples of where the medical jargon has been altered to make the language more relevant

Involvement with Outcome Measures

The difference of involving patient/public might be that the measures are more meaningful and have realistic expectations. It might help tackle patient opinions and perceptions on outcomes and increase transparency about the research. It can also help the researcher communicate about the trial in a more friendly manner. Equally, it challenges the researchers by having the patient present.

The IMPACT might be measured by having…

A different focus of the actual measures (ie more meaningful, realistic, patient friendly)
Examples of the original measures compared with later version

Involvement on a Trial Study Group
The difference of involving patient/public might be that the Group gains the different perspective - a greater patient relevance. It may help with the explanation of the way a study may need certain design and with locations of data collection. It may assist with the ethics - helping overcome possible risks to patients by already having their views. Involvement in governance allows us to explore how important to patients are adverse events. Yet, how representative of population are they? How do we address the challenge of wider reach and how to communicate/ methods of research- social media may not work for all.

The IMPACT might be measured by having…

Examples of the modification of the study design which came from the patient partner
Personal account from the patient about their involvement
A separate report of the patient & public involvement throughout the trial

Involvement for a Research Open Day

The difference of involving patient/public might be that we gain ideas on what patient and public really want to see. It helps us have a patient centred approach and brings the real world to our planning with an honesty and directness.  We learn about where they can get involved - eg the inspiring nature of patient stories.  The involvement can help increase access to the event, raise awareness and help with the dissemination and evaluation. All of this helps dispels the myths about research and connects the clinical to the outside world

All of these help change the culture: make research relatable; reduce the tunnel vision of academics/ clinical staff; remind us why we do research; cultivate transparency; ensures right people and right place; helps research have more impact; Inspires - provides empathy. It gives us the alternative perspective by involving the people whose lives we are trying to improve. We learn, researchers and public, as to how research effects each other.

The IMPACT might be measured by having…
A Evaluation of the Open Day with feedback from patients 
More people getting in touch and demand for the next event
Greater enthusiasm from both public and researchers

If only we had more time….

(The following notes are from the plans for the workshop which we didn't manage to get done)


The third task was intended to get people realising that the gain from patient and public involvement isn’t just to enrich the research. As patients we learn loads of stuff about the science, the questions, and about our own health and well-being.

The Q. was to be: What might patients/public learn from being involved?

I am currently a member of the Steering Group for the PRioRiTY ll - a group of trial methodologists looking at the uncertainties around trial retention. As patient partners we decided to ask ourselves various questions about our involvement at the beginning and half way through the study. We have started to summarise the comments and will continue until completion.


As we define and record our activity it is important to set our involvement with the National Standards for Public Involvement. This means we can measure our activity with that of others to compare and contrast; to ensure we are effective and to improve.

Participants might like to read about these and reflect on how they might be developed.


Almost all research, begin with search about what is already known - a literature review of published papers.

The final task was intended to ask participants to think about how they might report the patient and public involvement activity within the research, with colleagues and to the wider community.

You may want to consider submitting a document on the NIHR Involve websiteand/or producing a paper for the journal Research Involvement & Engagementjournal

Tuesday, 15 May 2018

Patient Advisory Groups (Part 3) - Purpose and Plans


This is Part 3 in a series of posts about Patient Advisory Groups - You can read the others Part 1 and Part 2

The likelihood is that the researchers will come to the Patient Advisory Group with quite specific requests so it important to keep the group focussed on the task. 

Patient Advisory Groups (PAG) that are effective, in my opinion, tend to have a very clear purpose and are resolute in achieving their goals. The explanation is very much in the title ‘advisory’ - to offer advice and give an opinion on the research and to the research team. For the most part these meetings are positive and productive.  You will find that it is perfectly acceptable to disagree but it is helpful not to be disagreeable. It is useful to have some Terms of Reference and a Group Agreement.

You can click the highlighted words to find some sample Terms of Reference from the NIHR Involve website. 

By Group Agreement, I mean a few points that the group feels are important to help it run smoothly - eg Respect for other people’s views, Confidentiality where appropriate, Time keeping, etc. Once agreed it is easier for everyone to keep the meeting on track.

At best, these Groups are formed at the very earliest stage of planning the research and have time to shape the research question, the ideas and thinking. In this way the group can provide useful insight about the concept of the research, the approach being taken and the writing of any proposal and grant application. 

The reality is that so much work goes into getting the research designed, agreed, approved, funded that the Advisory Group may be a later addition. Simply start from where you start. The difficulty for the researchers is that getting all this done is often on top of a day job. Once set up, even in the later stages of a study, you can be around to advise on the next study coming along and be there at the very earliest point. 

You will simply be where you are and you need to get up an running as quick as possible. Life doesn’t run smoothly as we know from our own personal experiences.

It can be helpful to look at various moments in the research study where advice from the PAG could add value, eg: suggestions about recruitment and communicating information about the trial; when some initial data is being collected and perhaps showing some results; later when the trial might be struggling to get the last few participants. You might also want to look at definitive tasks eg: reviewing the Lay Summary or the Patient Information Leaflets. 

The clearer you are about the task, the more likely you are to know if you have made a difference. It is easier to capture the 'before' and 'after' information - eg Here is the leaflet before I asked the Advisory Group.

We have loads of questions to begin with that move from the most basis of ‘What is health research?” to ‘What type of research is it?’. These questions get sharper as we develop and I have found Bloom’s Taxonomy of Asking Thinking Questions a useful guide to help reflect and consider our effectiveness. 

You may therefore want to think about how the meeting is shaped to include time to 'advise', to 'understand' and to 'learn'. It is the last two that I have found most rewarding. I have learnt more about my illness, the treatments, the research and about my own health and wellbeing.

Some groups don't actually meet in person for a variety of reasons (geography, cross infection, time, etc.) They can be just as effective but it is good to spend more time at beginning getting to know each other (a short personal written statement about what you want the Group to achieve can help)

The NIHR INVOLVE Standards

The issues raised in this series can be looked at in the light of the NIHR INVOLVE Standards which are aimed at helping us develop our thinking, understanding and practice about public involvement. 

I think the issues in this post fall mainly under the standard about Impact (and Working Together) - if you aren’t precise about the task then it will be nearly impossible to measure progress or impact.

My NEXT BLOG POST in this series about Patient Advisory Groups will look at DEVELOPING PEOPLE which I will place into the Standard about Learning & Developing

Wednesday, 25 April 2018

What Children's Hospitals can look like.

Reflecting on a visit to Sant Joan de Déu, Barcelona Hospital where the young person is at the centre of care. The key points of my talk for AQuAS can be found here.

A view from the hill
Over a year ago, I was at a Conference in London and heard about an amazing children’s hospital. The presenters, Begonia Nafria Escalera and Joana Claverol Torres, explained how children and their parents were at the centre of co-designing almost every aspect of Sant Joan de Déu, Barcelona Hospital. The photos they showed were inspiring. 

A few weeks ago, I had the absolute pleasure of visiting this hospital with its wonderful outlook over the city. 

The sights within the hospital are even more breathtaking. The entrance is light and airy - I have come into a a very calm environment, a playground, a welcoming educational experience. 

with Begonia and Joana

Begonia and Joana were wonderful hosts and guides. They are advocates of how hospitals can be friendly, informative, care giving and at the centre of research. Our friendship is made possible through the links made by GenerationR and @jen_preston1

Thank you for giving of your time to show us and our granddaughter around. Jayah saw it as one of her highlights of her time in Barcelona. 

The space is filled with objects that invite you to enter, play and enjoy.  Each object actually represents parts of the human body, the heart, digestive tract, the brain and the lungs. Useful practical metaphors to be used by clinicians in later talks with children and parents. 

Hello from Nottingham

A colourful and inviting shop (run by the hospital charity) is next to a friendly cafeteria. The parents and children played a key role in making sure the cafe area was open yet offered intimate private spaces. The staff were all smiling and helpful.

This is a hospital made for children and parents. Research is just what they do to make people better.

Sant Joan de Deu meets me as a person rather than forces me to fit into a medical world. 

In most Hospitals if you get cancer you enter ONCOLOGY, if you have difficulty seeing you enter OPHTHALMOLOGY, when you have difficulty breathing please enter RESPIRATORY. Here, in Barcelona, a deceptively simple leaflet asks Where are you going? and asks... “If you are a child and you need the Emergency Department then go to....”

This experience makes you question whether our hospitals use language as a means of control. I begin to wonder whether this is really acceptable any more. Perhaps it is time to turn the tide and learn from what is happening here in Barcelona and at hospitals in the UK like Alder Hey and become truly patient centred.

The signs throughout the hospital make sense and are illustrated with numerous outlines, drawings and cut outs of animals. 

There is forest to journey through. Cardboard trees give me the opportunity to comment.

A number of the corridors showed pictures of the many, many children who have posted pictures and thanks to the staff.

Every child's room can see out of a window (though people on the outside can't see in).

The consultation rooms and spaces are perfectly laid out to offer comfort and privacy 

There is a fabulous area where children and parents can lear to cook the foods needed for their diets.

A camera records the cook at the cooker and it is displayed on a seen for others to see and learn.

Everything is done to help children and their parents help comprehend and cope with the circumstances in which they find themselves.

Dolls, diagrams and soft toys explain, illuminate and help all of us understand. 

There is no doubting the knowledge and pursuit of excellence at Sant Joan de Deu. 

As part of our visit we witnessed the simulator suite, the use of technology and the briefing rooms. This is a modern, digitally aware community of practice that is striving to improve treatment and care. 

It clearly confident in its shoes - they may seem to be child sized yet they make such large steps that change the way we think about the hospital experience. 

There is a thorough understanding of the emotional and psychological needs of parents and children at times of that can be so traumatic and difficult. 

This is an enlightened management that doesn’t just listen to children and their families but thinks and acts upon what they have heard. Thank you!

And, talking on enlightened things - here is a short animation about Children’s Research from Nottingham University Trust Hospitals