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. 

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 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

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 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 

Article in Pharma Phorum

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

Arthritis Research Conference in Ireland which included science, treatments and care with patients attending