Saturday 28 March 2020

Data? The word makes it sound like a lot of numbers.

(This post was originally written for NIHR and was on the old website)

The term itself seems to divorce it from the human aspect. Yet for health and social care data is fundamentally intelligence about us. It is our information. 

If we are to genuinely make a difference to healthcare then we all need to get up close and personal with data. 

We should all know that we can opt out and say no to our data being used. I am talking here about the stuff that is gathered about our illnesses, conditions and treatments not about our address when the NHS needs to be in contact. 

Equally, we should be able to know how we can shape the wider dialogue about the use of data. We should be able to easily find how to contribute to discussion at local NHS Trusts, General Practice and other organisations. We should be asked our opinions and perspectives. We should know what is being done with data to improve health and social care.

When any research is being contemplated using large data sets there is, I believe, an absolute imperative to pro-actively reach out into the community to engage and involve the public. This has to go beyond having a couple of patient representatives on a committee. 

This more expansive approach to involvement is necessary if we are to maintain trust. It is needed if we are to fully understand and allay people’s concerns. It should be required as a means of exploring some of the more complex moral and ethical dilemmas that we are likely to face. 

Recent high profile breaches of data illustrate the importance of doing this constantly and well. It is not a matter of choice. 

For those of us in Patient and Public Involvement this is a real opportunity to encourage public presentations and open discussion on the use and value of data. Such events must be a true sharing of information.

The patient communities in cancer have been very active over many years as they saw the potential of using and sharing data. We were invited to many meetings and present at events and conferences. Our combined voices have helped to improve diagnosis, treatment, care and survival rates by working closely together with clinicians, researchers and data teams. 

This knowledge is explained by Dame Fiona Caldicott, the NHS Data Guardian in the 2017 Report:

"Data about people’s experiences of health & social care has huge potential for improving services and discovering more effective treatments & ways to provide care. Those benefits will not be realised without public trust."

Some of the most innovative practice, I have come across, in active involvement is actually with data in research. 

The team behind Cloudy with a Chance of Pain are holding an event in July to celebrate the way patient involvement has helped shape their research but also to let the public find out more. 

I attended a workshop for Nottingham BRC recently where patient were working in partnership to gather and analyse qualitative data. 

I am sure there are many other examples where the public are making a difference so please let us know. 

Last but far from least, we also need to know what happens with data that is used. It cannot be a one way street with the public providing all the information. 

We need to find ways to help us all to use data to remain healthy as well as make improvements when we are ill. 

These fabulous animations, from UseMyData  are a great beginning -

Derek was one of two patient/public members of the Ministerial Data Strategy Board in 2018-19. 

Thursday 12 March 2020

Making Your Voice Heard

A few notes from a workshop for members of the Patient Forum at the British Society of Periodontology (BSP)The Patient Forum is a great diverse group of those directly affected by gum conditions who want to improve gum health by being actively involved with BSP and dentistry. You can follow @BSPerio on Twitter

An introduction

It may seem odd that a workshop on Making Your Voice Heard is facilitated by a throat cancer patient. I can assure you that there is no irony. I would actually say that I found my voice as a result of that experience. The diagnosis of a life threatening illness can tend to do that as it reminds us of the importance of living. 

I have found that being actively involved in health services and research helps me understand my health, make sense of what occurred and makes meaning for my actions.

Simply, I want to make it better for others and that is something that the great majority of people working in healthcare services also want to see. Being involved with researchers adds further value as we get an understanding of the much broader issues and the uncertainties. 

It is precisely our direct personal experiences that help us feel, think and give us the 'power' to make our voices heard. Such experiences provide us with information, knowledge and understanding. These can provide insights that are of great value to those providing health and social care services or seeking to do research.

Start by thinking about what you want to improve or change?

We began the workshop by considering where people were in their experiences of the condition and what they wanted to improve. The professionals who were present joined in as they too have opinions on what needs to change.

The group were asked to think about their experiences in 4 phases: 

1) the time before diagnosis
2) the actual diagnosis
3) the treatments
4) living with on a day to day basis. 

This can be a useful way of moving beyond just telling our 'story' to reflecting upon the various events that happened. 

Our experiences provide…

·       Information - about what happened where and when
·       Knowledge - about living with our condition and being treated
·       Understanding - about what it feels like to us and our families

It can also help us consider what could be made better. We may want to change lots of things but it is sometimes best to start with something we feel strongly about and think that there may be a solution.

The Forum members worked in two groups and chose to consider improving dentist awareness of gum problems and addressing aspects of service provision, particularly for those who might not be able to access service. 

Where to make our voice heard

In this instance, we presented to each other rather than to an individual or an organisation but in real life it is always worth considering who you are talking to, their role and what influence or power they have in helping deliver the change. 

A presentation to a local Commissioning Group will be different from a talk to room of dentists. It is therefore helpful when practicing your presentation to ask those listening to place themselves in the shoes of the intended audience.

Shaping what we want to say 

The basic framework described below was used with Macmillan Cancer Voices and developed initially from the College of Health by Gillian Fletcher and Jane Bradburn. 

When we get a chance to make our voice heard it is worth having a framework in mind to help structure your thoughts and to make sure we cover a number of points. 

The groups were asked to think about what a) a clear statement about our personal experience (something short and pithy that catches attention) b) Policies or Statements (what guidance and information is there about gum health) and c) Any audit or observations about what others think (to show that you have talked to others)

It can be useful to describe the problem but even better to be able to suggest some solutions. It can be helpful to say how you might help.

As we were in a practice or rehearsal mode the only rule was that any feedback had to be as a  positive statement.

The short presentations by each group were succinct, powerful and compelling. The points raised covered the good and the poor of patient experience, recent evidence about practice and addressed health inequalities. Attendees commented on how the framework helped them get their points across and that it didn't necessarily need a group.

One last point, which we didn't touch on in the workshop, is about 'holding to account'. In other words, towards the end of any meeting with healthcare professionals or commissioners it is always worth asking what is going to happen next, when will it be done, who is going to do what, how will we know and where will we meet next.

Learn from others

Patient involvement has increased over recent years so it is always worth thinking about other patient communities with whom you might have things in common. 

For the BSP Patient Forum this might be head a neck cancers, patients with thyroid problems or having had a stroke. Quality of Life is a major factor in healthcare so you may wish to look at those doing research into eating, swallowing and fatigue. Access to services was repeatedly raised in the workshop so you may also to look at provision of services and the issues around the determinants of health. The recent Marmot Review 2020 makes sobering reading.

And finally

Remember, it is NHS policy to involve patients and public with the development of health services and with research. For many years, we were missing from the tables and from the discussions.

A cartoon, years ago (I think it was in Punch), showed a Consultant with his registrars all beside a patient in a bed. The Consultant holds his hand up to stop the patient speaking and says “When we want your opinion, we will give it to you!” It may be an exaggeration but it captures a certain truth about how things were. 

One medical journal illustrated us as ‘alien creatures’ at the table at the concept of us being involved with research.

We are not at these meetings to be the clinicians, the researchers or the scientists. That it their job. We are present to remind them of the purpose, provide insight from our experiences and together help create and develop the future.

What was particularly assuring about the workshop was the commitment by British Society of Periodontology (BSP) to involving people with direct experience of gum disease but also their intention to have representation on their Council.

Thank You to all the members of the Patient Forum and Professor Ian Needleman and Professor Nikos Donos, the 2020 President of the BSP.

Note: The BSP Patient Forum is supported by an unrestricted grant from Glaxo Smith Kline and it was so good to see a member of their staff in attendance and taking an interest in how patients can be involved.

Further Reading

You might like to read some of my other thoughts on Patient Advisory Groups written for the Nottinghamshire Breast Cancer Group. This continued with From Story to Reflection - Part 2 Purpose and Plans - Part 3 and Developing People - Part 4

Monday 30 September 2019

Patient, Public Involvement (PPI) in industry-led research – bringing charities and industry closer

A Guest Blog Post from Claire Nolan on important new guidance...

I am delighted and proud (as well as relieved!) to say that last week saw the launch of the Charities Research Involvement Group’s ‘Supporting Patient and Public Involvement in industry-led research: guidance for charities’. Developed and written with my colleagues in the group, I’m thrilled to have been lead author, especially as it was my first ‘gig’ as a freelancer. 
This is a much-needed guidance, which hopefully complements the brilliant resources already out there but takes a step by step, practical approach to helping charities in the UK with where to start when considering working with industry to support PPI.

The resource I wish we’d had…
Three years ago, as Research Involvement Manager at Parkinson’s UK, I started on my journey to understand how we could support the pharmaceutical industry to work with people affected by Parkinson’s to ensure their Parkinson’s research programmes were focused, sensitive and more likely to deliver better treatments, faster, to those people that needed it most. 
Through our PPI programme, we’d already supported over 100 academic research teams to work in partnership with 120 people affected by Parkinson’s in the prioritisation, design and dissemination of Parkinson’s research. But whilst we had this well- established, successful programme in place to support meaningful involvement in academic research, replicating that in industry-led research was another thing altogether.
The complex nature of medicines development and approval processes, the systems, procedures and risk averse compliance departments as well as the multinational nature of pharmaceutical companies meant that even knowing where to start was a challenge. So, we started from the beginning and spent a good year networking, attending pharmaceutical patient engagement conferences and trying to make connections in this mystery world!
We eventually connected with the UCB (a pharmaceutical company) Patient Engagement Lead for UK and together we worked to deliver patient involvement in two of their projects. 
Our experience of working with UCB was an incredibly positive one.  We worked together as a genuine team and the projects with them were examples of really meaningful PPI. But working with them was also complicated and time consuming, particularly with regards to the contractual process and internal approvals processes. We learned a great deal from our experience, and we wanted to be able to share that experience with others.
It is here that the stars align to bring about this guidance…
Through our Charities Research Involvement Group (CRIG) meetings we learned that other CRIG members including Versus Arthritis, Asthma UK and Autistica were also starting to work with industry to support PPI. 
So, in July 2018, CRIG worked with the Association of British Pharmaceutical Industries (ABPI), to bring together pharmaceutical companies and charities to discuss how we could collaborate more to support PPI in research. An insightful meeting which, among other priorities, confirmed the need for a ‘how to’ guide for charities to understand how they could collaborate with industry to support PPI. CRIG committed to producing this guidance and in April 2019, as a new freelancer, I worked with CRIG members and some PPI contributors who had experience working with pharma to outline what the guidance should cover and then over the last five months have worked with those same charities and PPI contributors to produce it. 
I hope that charities new to this area will find it useful, and I’m more than happy to discuss the guidance with any charities who are considering working with industry to support PPI (
Thank you to Derek for allowing me to gate-crash his blog and a big thanks to Bec Hanley and CRIG for the opportunity.
Claire Nolan

Note:The Charities Research Involvement Group is a collection of almost 40 charities who come together to share experience and best practice as well as tools and resources for supporting PPI. For over 10 years, members have work ed together to improve quality of PPI in research. For more information about CRIG, contact

Thursday 29 August 2019

Taking Part in Research - a relationship?

pint? Have you gone raving mad? [...] I mean, I came here in all good faith, to help my country. I don't mind giving a reasonable amount, but a pint? Why, that's very nearly an armful!  (Extract from The Blood Donor - Hancock's Half Hour)

In good faith?

Tony Hancock’s portrayal of a blood donor still resonates today. Donation, that selfless act of volunteering to help others. After almost 60 years, since the broadcast, is it time to redefine the relationship, particularly as it applies to health and care research? 

The concept of giving in itself implies receiving yet at times it may still feel, as Hancock observes, more like taking. This seems especially true in health and care research despite many robust efforts to make it more of a partnership. Too often, people take part in a study and never hear another word about it. Should this transaction become more of an on-going and transparent relationship?

Being clearer and more concise?

Over the past few months, I have been involved with the Health Research Authority helping to develop their Transparency Agenda. I am a member of the Strategy Group and have attended various meetings and a number of the #MakeItPublic workshops. The consultation is now finished.

In this context, Research Transparency has four key elements:

  1. Registering research
  2. Making the results of research public
  3. Letting research participants know about the results of the research
  4. Making data from studies available for further research.

I want to concentrate on the third element - letting research participants know about the results of the research. One of the commonest complaints from research participants is that they took part in a clinical trial and never heard anything further. In today’s world that looks like poor manners and may even seem unfair.

More than just the results

As the weeks have passed, my thinking has developed. I have begun to question whether it needs to be more than just informing those people who took part in a research study. 

There are a number of factors influencing my thoughts. Medical advances in recent years have meant that many people are now living longer as against a time when research was often seen as something that took place at end of life. Smartphones and other digital technologies gave us instant access to information and enable communications which were unimaginable a few years ago. Thirdly, the public frame of mind has become more exacting in our expectations and rights.

In the past few years patients have changed from being seen as the subjects to being partners, actively involved with researchers. We have moved from just raising funds to being active supporters engaged in many different aspects of medical research. Trust has become a major factor with those who give to medical research charities. We have also raised our expectations of how we wish to be dealt with in many other aspects of life.

Interestingly, one of the most pleasing comments from research participants is just how many are touched when a researcher does actually keep in contact with them and how that made them feel informed and included. It was seen as a lovely thing to do - of  good practice. These are matters of common courtesy, decency and in some respects as good ‘customer’ relations.

A Mutual Relationship

For health we are dependent on each other. Without our illnesses, conditions, diseases and ailments there would be little to actually research. Perhaps the whole consent process should be redefined as a two way procedure where, as participants we sign to join the study and the researchers sign as to the ways we can be kept informed? 

This, for me, comes down to mutual respect and a better understanding the research practice and experience. It may be worthwhile reflecting on Mahatma Gandhi’s saying - customer is the most important visitor on our premises. They are not dependent on us. We are dependent on them.

It is about knowing what we can expect, whether we will have the opportunity to receive updates on the progress of the study. This will be, I believe, be of importance with the development of Studies Within a Trial (SWAT) as people might be keen to hear about other research.

I am not suggesting that all the information about a study is revealed for all. 
It does not mean the actual evidence, the latest findings or any internal interim results. Transparency is about being distinct and clear. It is not being see-through.

Keeping in Touch

The first time I came across the good practice of keeping in touch with people who took part (healthy volunteers and patients) was the study on the Long term impact of screening on ovarian cancer mortality - the UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS)

They produced a Thank You card which simply acknowledged their gratitude and set out the key facts from the study. It was informative, thoughtful and touching.

Some researchers are using digital technology like Cloudy with a Chance of Pain whilst others have set up either closed or public Facebook Groups.  For example the ALPHA Eczema Trial posts regular information about trial registration, public workshops and where the trial leads are speaking through their Twitter account @LICTR_Alpha and website

This is about being more open and keeping in touch. It is not about the trial results. I am talking here about information as to whether the trial has recruited the numbers of people it needs, how fast or slow this is taking, whether the team is looking into other similar areas of research and if they want/need patient insights.  

What might the relationship look like?

High quality peer reviewed research is necessary to improving wellbeing and healthcare. It requires rigour, time and to able to be reproduced. It does need to follow not however need to be entirely done in secret.

It seems to me that in a time of misinformation and distrust we need to focus more on being more open and transparent. We need to develop greater understanding of each other’s perspectives and come to some form of clarity as how we communicate with each other.

  1. TRUST is a key factor. The importance of doing research with people not to them. It is why the whole movement to actively involve patients and the public is so vital - it provides opportunities to ensure that research is relevant, appropriate and suitable.

Trust is gained by explaining why the research is important and acknowledging the contribution made by the participant - that recognition and thanks. It is also about a cultural attitude that conveys the value of learning. You can read more in this BMJ article about being Research Active.

  1. UNDERSTANDING is at the heart of the words informed consent. 
 is at the heart of the words informed consent. 

This is the importance of a good Lay Summary and Patient Information Leaflet - especially when these have been written by people affected by the condition and checked by members of the general public. It is the mutual gain from the exchange of knowledge and experience on both sides that helps us all understand.

  1. CLARITY around what, when, how and where information about the study will be made available. This should be the expectation of every study participant along with choices about how they wish to be kept in touch. 

I now believe that we have to consider that trial participation is as much about an agreement, a more equal relationship between research and the public - a commitment to each other.

Finally, a request

I also know that there are many researchers who keep in touch with those who have participated in their studies. There are many trial participants who have welcomed this contact and others who have helped prepare the lay summaries.  

Do you have any good examples to share? Please post examples using #MakeItPublic

Thank you Malcom Babb for drawing my attention to the lay summary of the results of thDe-ESCALaTE HPV Study which clearly states - Written by Patients for Patients. Thank you Dr Marianne Piano, who informs all her study participants at their final visit they'll hear from me again in the new year with a dementia-friendly postcard laying out the study results and what's happening next.

(which is now closed)

Please Note: Derek Stewart is an advocate for patient voice in health and care research. He is a member of the HRA Strategy Group and a Member of Cancer Research UK

Monday 8 July 2019

Keep Up to Date on Data

Some interesting articles

There have been a number of interesting articles recently, I thought it might be good to curate some of these in one place. It seems really important that in the world of Patient and Public Involvement in Research we keep ourselves up to date on data.

*useMYdata, is a movement of patients, carers and relatives supporting the use of personal health data. They are great source of information and have a series of Patient Advocate Stories (1) 

You can sign up for regular updates by emailing:

If you are new to all of this then Understanding Patient Data (2) is a good place to start. 

It explains why, how and what Patient Data is used to improve diagnosis, care and treatment.

They produce some really helpful YouTube animations and other information.

The Association of British Pharmaceutical Industry (ABPI), The National Institute for Health Research (NIHR) and the Association of Medical Research Charities (AMRC) held a Panel at their Pioneering Partnerships meeting

This article, about the event, is a timely reminder that it is about people. (3) 

Health Data Research UK (4) brings together those working and interested in the thinking and practice of use patient data. They have a Public Advisory Board. Their News and Features is worth looking at.

The Wellcome Trust has just announced significant funding of £75 million in health data. 

Just as the above article talks about people so Wellcome stresses the need for trust in their announcement (5) about the purpose of this investment.

The National Data Guardian, Dame Fiona Caldicott is calling for a public debate on the future relationships between the NHS and those innovating using patient data (6) This follows the results of a poll of over 2000 people.

Of course in all of this, it is really important to give the sources of the data when reporting on research. Where did the data control come from AND have we thanked the patients? The UK Data Service provides a useful shortYouTube clip Cite the Data. (7)

There are many big issues at stake here and I found the comments in this article from Open Democracy (8) a useful guide to the opportunities and risks.  

Websites linked above

1. Use My Data:

2. Understanding Patient Data:


4. Health Data Research UK:  

5. Wellcome Trust Funding:

6. National Data Guardian

7. UK Data Service:

8. Open Democracy:

I have written other posts on data on this blog and another piece was in the NIHR website 

Sunday 12 May 2019

Reaching OUT to involve Communities with Health Research

I love #WhyWeDoResearch 

It is, quite simply, an excellent example of REACHING OUT TO INVOLVE COMMUNITIES WITH HEALTH RESEARCH -

           For more on this very topic, follow the Tweetchat 13th May 2019 1200-1300hrs

@ClaireW_UK looked beyond her day job, asked how the health research community might be brought together using social media then just went ahead and did it. Gathered a few friends, began a few Tweetchats, then a number on a single day to a veritable smorgasbord of dialogue. Read more about the campaign in the BMJ here.

The great, the exceptional and the unique #WhyWeDoResearch TweetFEST 2019 took place from Mon 13th May for two weeks. Check out the # for all the tweets.

Reaching out to colleagues, linking it to International Clinical Trials Day and encouraging others to host the conversations. It is led by the community and guided by Claire. It is whole community from research nurses, researchers and patients to research organisations, industry and leaders. It is WORLDWIDE. It is vibrant, exciting and fun.

The breadth is amazing - two full weeks this year - make sure you bathe your hands, do regular exercise and add some hand cream to keep your fingers agile and supple for full-on tweeting.

It is therefore a privilege and an honour to be kick starting #WhyWeDoResearch TweetFEST 2019

How do we do more to REACH OUT to involve communities in health research?

This question lies at the heart of work I am doing with communities and colleagues in Nottingham. Nottingham University Hospitals Trust is a research active hospital and keen to see health research as a driver to improve health, wellbeing and social care. Our Nottingham is Research Strategy sets out our ambition.

Our enquiry led approach helps us to constantly ask….

  • How can we do more to help improve peoples lives through health research?
  • How to we go beyond waiting for the person to arrive at clinic and work with communities to use health research?
  • How might patient and public involvement to reach out rather than selecting a few people to attend health research meetings?
  • How do we ensure that research evidence reaches out to change practice?

These will form the basis of the Tweetchat but let me offer a few examples…


I was recently in Galway, Ireland for their Annual Patient & Public Involvement in Research event. It seems right to highlight a few examples of how they are Reaching Out. It is part of the Ireland Health Research Board - Ignite PPI.

First of all the event was help in a venue with easy access by public transport (next to the park and ride) at the Institute for Lifecourse and Societyat National Universities of Ireland - Galway (NUIG). The Institute supports applied research that informs policy development and practice to make a positive difference to people’s lives. A cafĂ© on the ground floor invites you in.

Read more about the @PPI_NUIG conference

Reaching out with Schools

They have a brilliant way for schools learning more about Clinical Trials through the START Competition - Read more at  and watch an Introductory video here START Q & A Session (05-02-19)

A further initiative is through Evidence Synthesis Ireland @EvidSynIRL where they are keen to make Medical Research findings need to be more accessible. They have engaged the journalist @muirishouston as their Writer in Residence - you can read the article in The Irish Times.

Finally from Galway, they have been working with the Medical University of South Carolina’s (MUSC) Community Engaged Scholars (CES) Program

Dr Carolyn Jenkins spoke at the 

It will be really interesting to watch how this develops as it firmly about partnership working,

And if you thought it might be difficult to Involve people in science the you should read Dr Emma Dorris and colleagues here


There is the amazing Cloudy with a Chance of Pain which uses our smart phones to access meteorological data to help understand arthritis. 

There is the equally amazing, Genes and Health - East London and Bradford  with over 37,000 people giving consent but with so much more going on to transform people's lives.

And, yet another amazing example, Harvey's Gang showing how even complicated science can be communicated

You can watch the presentation - here

You can read more about some of the ways patients, carers and the public get actively involved in pre and non clinical research in a previous yet on-going post - here