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 café 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

Sunday, 3 March 2019

What are the difference between some aspects of Qualitative Research and Patient/Public Involvement?

What are the difference between some aspects of Qualitative Research and Patient/Public Involvement? 

NB: If you can come to read about Knickers to Involvement, you will have to read the whole post ;-)  

I struggle to describe and define the difference when asked this question at a workshop. I fall back on the easy response of referring people to the joint HRA/Involve paper. Putting my thoughts done here was initially prompted by a conversation with Kristina Staley and Bec Hanley. We just met for a chat over coffee and that conversation set us all thinking and these ramblings. 

PLEASE READ Kristina's Blog where we are trying to set out our thinking in a chart

Please use #QualitativeandPPI when responding on Twitter

As for my thoughts….

I suspect that it is an exercise in how little I actually know but I always find that seeing the printed word helps to clarify my thoughts. It allows me to hopefully apply some logic to unpick the issues. As with virtually all I write, it is an attempt to enquire - the purposeful use of a question in a search for sense.

At the outset, I should indicate my commitment to Qualitative Research is almost unbounded. I consider that it provides valuable evidence about people's opinions, attitudes and experiences of healthcare. I believe that all clinical trials that have a qualitative element have a greater potential to provide a broader understanding to help make better clinical decisions. I am therefore, I suppose, biased.

The practices of both Qualitative Research and Patient Involvement have their own place in developing of improving people’s health and wellbeing. I would like to suggest that for the most part they are fundamentally different, yet at other moments they are almost joined seamlessly. They may even at times occasionally collide. 

Let me start by seeking to illustrate what I believe to be the difference. 

Sharpening the Research Question

A researcher may set a question based on validated qualitative evidence that requires further enquiry. It may be seen by the clinical and academic community to be the valid question to ask and therefore worthy of enquiry. Peer review may support the hypothesis that subsequently leads to a successful funding application.

Patient Involvement, however, can often give a more nuanced view about the research question. It is about how the question is phrased, the subtleties of tone in certain words.

I have heard researchers say that by involving patients and the public that their question became much better. The changes proposed by actively involving patients and the public have been about making the questions sharper, more pertinent and precise to the needs of those who are the intended beneficiaries of the study. These discussions are rarely about changing the actual question or telling the researchers what to study yet some researchers see this as a genuine concern.

Patient involvement is firmly in the area of the ‘personal’ - the distinctive added value, driven by direct experiences. Qualitative Research seems to provide a synthesis of opinion.

But where does Patient Involvement come together with Qualitative Research? 

The Unanswered Questions

The use of the James Lind Alliance - Priority Setting Partnerships enables patients and researchers come together to identify any unanswered questions. 

These partnerships gather the separate views of patients and researchers. This joint nature of this endeavour makes it then difficult to see exactly where the line between the two falls. I am not sure this matters as it is the outcome of identifying the areas that need further research that are most important.

Let me offer another example focusing on a particular practical task...

Personalising the Patient Information Leaflet 

We, patients and researchers equally, want Patient Information Leaflets that provide accurate and helpful advice about a study.  

Qualitative research can provide useful evidence about what makes a good Patient Information Leaflet. It can ask for people’s views about how they might like to receive information. These studies can provide useful advice about content, layout and format. Yet, this qualitative research is often general advice and less study specific.

Patient Involvement can give advice that is about the individual study. It can suggest the use of different words, changes in tone, alter the layout to make better sense. It is about the ‘personal touch’ from people who experience and know about the condition/illness being researched. 

There is a strange dichotomy here that I, as a patient advocate, know about the work on Patient Information Leaflets, yet many researchers I work with don’t. Qualitative research can therefore inform and influence patient involvement and the latter‘s knowledge can inform about the value of this work.

Peter Knapp, a senior lecturer at York, states that there is no evidence about whether this leads to more people taking part in studies yet it feels morally right and reassuring that patients have had a say in the development of the research.

This personal perspective and moral compass can be replicated in adding value to inclusion criteria, recruitment, analysing data and in the way research is disseminated. 

But, how else might we work together yet retain our separate perspectives?

Patient as Partners in Qualitative Research

I had the pleasure of attending a workshop in Nottingham where a researcher wanted to ensure that the work identified areas of genuine importance to patients, which researchers might miss when running focus groups.

She and colleagues ran a half-day introductory workshop on the qualitative method they were using which everyone found highly informative, enjoyable and useful. One of the patient reps then sat in on the focus group, which was seen to draw out a deeper understanding of patients real concerns.

The qualitative researchers are still qualitative researchers giving that professional viewpoint. The patient partner is still giving the patient perspective and able to identify a phrase or attitude that reveals a truth. By working together they each add value.

Words have Different Meaning

I have heard and read much about the attitudes of people affected by cancer to the word ‘battle’ being used in articles and conversations with patients. It seems sensible therefore to avoid using a word in a leaflet that might upset or even offend someone but how will we know without having those conversations. 

You may also have noticed that I just used the phrase ‘people affected by cancer’ rather than patients. I use it because it is more inclusive of relatives, friends and colleagues. I was a cancer patient almost quarter of a century ago - I am not now. It is these subtle changes that sit within all health domains, are prevalent across all professions and exist in all relationships. 

Involving patients and the public is that opportunity for a reality check. It is on the grounding in real life understanding. It is the application of common sense. Paul Workman, from the Institute for Cancer Research wrote about this recently.

A Summary

Qualitative research is rightly about standing back, observing, gathering and analysing the evidence to offer comment. Patient Involvement is more about stepping forward to speak up from a personal perspective. Meeting each other and working together for mutual understanding and making research personal. It is about mutual gain from a relationship.

Qualitative Research is clearly about ‘evidence’ whilst Patient Involvement may be more about the ‘individual’ but each brings and provides knowledge. It seems to me that it is as incumbent on patient advocates to know about qualitative research as it so often relies on their experiences and provides backing for our discussions. It is a chance to learn about the different methodologies that are used from questionnaires and surveys to narrative analysis. 

We can understand why people take part in but it was many patients who asked for a Patient Research Experience Survey about what taking part is actually like. We will want and need qualitative research to review, analyse and give evidence about the types of questions, the responses achieved. But sometimes it is about the poster on the wall, a mis-worded phrase that lacks the personal sensitivity and empathy.

And finally

A person may choose to buy and wear clothes to make them feel that they are reasonably keeping up with fashion but the views of their close family and friends can give opinions that are both immediately practical and apposite. They may be kind or maybe difficult to hear yet they stop us looking ridiculous. 

There is a part of Patient/Public Involvement that can say the Emperor has no clothes when those working in research may be more conscious about their careers.

There was a wonderful quote on Twitter recently that Involving Patients and the Public "might reduce the chance of the researcher making an arse of themselves". 

If that is correct, then I wonder then if Qualitative Research may be more about saying what type of knickers we prefer to wear. But is it Patient Involvement that can really say which knickers are the most comfortable?

PLEASE READ Kristina's Blog where we are trying to set out our thinking in a chart

Please use #QualitativeandPPI when responding on Twitter

Monday, 3 December 2018

Health Care Data - Improving Lives through Research

Health Care Data - Improving Lives through Research Follow #healthdataconf18 on Twitter

This article follows on from a post I wrote a few months ago: The word DATA makes it sound a lot like numbers! It can be found on the National Institute for Health Research (NIHR) website here. I find it helpful to record my thoughts as I get more involved in this part of research,

I have been a member of numerous 'Patient Panels' at Conferences over many years. These Panels are most often at the end of the day or just before lunch. Attendees sometimes seem more intent to get home or are very hungry.

Today, at the Health and Care Data: Improving Lives Through Research conference, we are on FIRST. It is a positive reminder that this is about improving people's lives. It is about setting a tone of partnership. It is about imagining how data can be used to make a difference. It is a lesson for other conferences.

The event in Leeds on 3rd Dec was organised by Health Data Research UK, the National Institute for Health Research and NHS Digital

The Panel consists of Molly Watt, Usability and Accessibility ConsultantRichard Stephens, Chair of the Cancer Consumer Forum and myself. It is chaired by Simon Denegri, OBE, National Director for Patients.

Here are some of issues I think about when considering data...


I want my health information to be used to help me live well. I would like to think that data on me could help others. I hope that I will be informed about research studies I might wish to join. I want to know the results of any studies I join. 

I hope that all of those working with health data remember it is not just information on a spreadsheet - there is a person, their close family and friends as well as those who might just point at them in the street. It could easily be a relative of yours.

It is why involving patients, for example in this Panel, is so important. Getting the perspective of patients and members of the public helps affirm our actions or even challenge our accepted thinking. It can provide an assurance to our work and help unpick some of the moral dilemmas.


Many years ago when I was handling information about a young person excluded from schools, I composed it a manner that that protected the individual and them usually hand delivered the letter. It was a highly considered act because of the numerous stages - nowadays it is too easy to just press send without consideration of the consequences.

We need to remind all staff working with data of the importance of being respectful. The speed with which information can be shared has positive or negative repercussions.

My two rules of thumb are: ‘Would I post private information on my front door?’ and ‘How might a tabloid newspaper view and report this information?’

This all comes down to a matter of trust and why we need Patient and Public Involvement for our decision making. It helps to think through the possible responses and reactions for research and possibly to avoid breaches.  


I often feel that there is a risk that data gets collected because it is possible rather than needed. It seems more important to think about what aspects of people's lives need/want improvement and ask what we might gain from the data. Equally, asking data experts how we might gather and use it effectively is a key feature of modern working in research. 

We can apply the following comment by Professor Stephen Evans, the medical statistician, to health data research "It is better to measure imprecisely that which is relevant that measure precisely that which is irrelevant" (BMJ Reference below)

Again, it is by engaging the public and offering further opportunities to get actively involved in meaningful dialogue that helps identify the most valuable information.


By engaging the public you show how you have been working together, how you have sought to be inclusive and you can demonstrate the impact that these discussions have upon the research. 

Involvement can illustrate how patient experience, insight and knowledge have helped shape your thinking, behaviours and actions. It ensures what you are doing is relevant, suitable and appropriate.

Some further notes...

Health Data Research UK has a Public Advisory Board

The Population Health Research Network in Australia has a policy to actively involve pateit=nts and public includes learning and development opportunities

BMJ 20th May 1995 Vol 310 Pages 1315-1318 What do I want from health research and researchers when I am a patient?

Wednesday, 28 November 2018

Developing a Research Culture

Many thanks to Worcestershire Acute Hospitals, Wye Valley and Worcestershire Health & Care NHS Trusts for inviting me to give a talk at their Developing a Research Culture conference. 

What does being Research Active mean? (You can read my other blog post on this on the BMJ website which can be accessed here?)

I believe that a Research Culture can be identified by a common desire to provide and receive the best treatments and care. It is about us being open with each other about what is known and what is not known. It is about creating a partnership with our communities that helps us ask the relevant, suitable and most appropriate questions. It is about clinical practice and the services we provide being an agreement with patients and their families - a mutual learning environment. See the Kings Fund report – Shared Responsibility for Health.

It is about research being integrated into the normal and everyday part of the patient pathway but how will we know?

How might we all see, hear and touch a Research Active Culture? 

This is my Top Ten (Well, actually just 9 as I am keen to know what you think should be added at number 10)

Signage in Liverpool
1. RESEARCH GETS A MENTION…in letters, outpatient appointments, consultations, on noticeboards and through different media and language.                                                       

2. WHY WE DO RESEARCH…explains the ambition and value of providing the best evidenced based care and treatment for patients. e.g. that high quality research is a means of making sure our patients receive the best care; that research drives the work we do; that we retain and attract the best staff. Join #WhyWEDoResearch on Twitter for a conversation.

A Business Card from Nottingham
3. ASK ABOUT RESEARCH…becomes a norm People are prompted to ask if there are any research studies that would suit - link to a list of active studies. Staff are encouraged to apply for NIHR Fellowships. And providing staff including reception and the Board with the appropriate responses including the important use of Patient Data.

4. EVIDENCE IS APPARENT…on display boards about the types of research that has taken place over the years (Selected by a patient panel).

A Research Day in Birmingham
5. STORIES ARE TOLD…in Monthly bulletins about patients taking part, the research nurse, researchers work, lab and tissue work, leader board.  

6. LOCAL PEOPLE INVOLVED...and encouraged to help inform, shape and influence the research by identifying priorities. Patient Involvement is inclusive and reaches out into the community including support groups. 

7. THINK DIGITAL the way technology is used to improve the research experience. Research on Trust Home Page -  One click to a page celebrating practice, the stories, the policies, performance and media coverage. 

I Am Research Campaign
8. PARTNERS ARE ENGAGED Examples of local and national work with local council, charities are included in annual reporting.

9. HOW WE CAN ALL made clear on signs and display as to how people can get involved, take part and donate, money, blood, tissue and data. Use small business cards, postcards, leaflets and completing the Patient Research Experience Survey (PRES)

10. What would YOU add to the list?????

Community Involvement

To ensure we get these right it is vital to actively involve our local population. It ensures that the research and the culture is…

·      Relevant- directly related to the individual - why it is needed and wanted

·      Suitable - for a particular purpose and part of the patient pathway or service

·      Appropriate - whether this is something we should be doing.

This involvement provides the opportunities to tap into PATIENT EXPERIENCE and INSIGHT, KNOWLEDGE and SKILLS. Equally we, as patients, get to understand more about our health and the challenges faced by the NHS.

YOU can, of course, also suggest...

A TOPIC for Scientific Enquiry (Closes 29th Nov 2018) by the All Party Science & Technology Committee

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