Tuesday, 1 December 2015

Open Research - No Hiding Place

As we think about Open Research, I have chosen 'No Hiding Place' as the title for my talk. This was the name of a TV police drama in the late 1950's. It brought to the small screen a more modern approach to policing that had been categorised by the reassuring local police presence 'Dixon of Dock Green'. 

It was a very different time. 

A single television channel, in black and white, which was availabile for a few hours during the evening. The world in colour provided only in short edited 'newsreels' when you could afford to go to the cinema. 

No Hiding Place was intended to capture the changes in policing and, I suppose, send out a message of reassurance to the public. I was enthralled and engaged by owning a toy car similar to the one seen in the opening sequence. 

We live, now, in a very different world and I would like to illustrate the need to engage and actively involve the public using three objects: my phone, wallet and wedding ring. These are presented as symbols of the need for greater openness and complete transparency.

Let me start with the ring. It represents a relationship.

For years in research there was NO relationship with patients and the public. We were merely seen as trial subjects, to be done to, numbers for recruitment. Research was for researchers. Actions were taken at times without our permission and even without our knowledge. Belsen, Tuskagee, Liverpool. Individuals, like Henrietta Lacks, were not acknowledged nor recognised until years later. The public reactions to these events resulted in policy changes, damages reputations and for industry adversely affects the share price.

This takes me to my wallet - in the past the financial relationship with the public was similarly uni-directional. Research charities set up, ostensibly by scientists for scientists. The desire was genuine yet left a pervading attitude of we are clever people who can find cures: give us money. The outcome has allowed many of us to live beyond the diagnosis of life threatening illnesses but the public wants more.

You will, by now, sense a certain crude simplicity in my hypothesis yet the intention is one of distillation and clarity. 

The third object is the smartphone - representing information. In essence, it symbolises the transformational need to address open research as never before. These phones demand, enable and have the potential to empower the world of research. Equally, they hold risk, a simple comment can circulate the world in minutes in less than 160 characters 

Open Research cannot just be about open science, open data, etc. It is as much about open thinking - a change in the culture of researchers as much as the practice. 

The smartphone provides me with information 24hrs a day that will allow me to find out about and increasingly gain access to available studies through the NHS CHOICES website

I can even find out about Improving Healthcare through Clinical Research, a University of Leeds - Future Learn initiative that has had over 8000 people signing up for its first run. A familiar theme in the online dialogue is about what happens with the results of a study. 

I can communicate with patient groups, advocates and researchers throughout the world. I can help inform, persuade and shape research. Increasingly, I am seeing research that invites me to become a partner and to use data I collect on my health and wellbeing.

For researchers, mobile devices offer opportunities for better study design - crowdsourcing ideas, contacting patient communities, crowdfunding to finance a project. Wearable devices and combining data offer exciting new areas of research as well as many technological challenges. 

All of these require a very different relationship with the public in general and especially with people affected by an illness or condition. 

It is no longer enough to say the professional knows best. The knowledge balance has shifted and consequently so has some of the power and influence. 

The public is becoming increasingly selective about what they will fund and charities are responding. Care and self management of a condition are now seen as important to patients as cure. Quality of life and story can now be combined as never before.

Relationships are not easy. They begin, they evolve and sometimes they break. They seem to work best where there is joint journey, a reciprocity, an honesty and a sense of humour.

For Open Research it has to begin with more conversations with people who are affected by a condition or have a likelihood to develop it. Open Research is about maintaining that relationship in a way which is manageable and appropriate. 

There will always be people who make hiding places. 

Your choice, is whether to see Open Researcher as a way of life in research - why wouldn't you do it. 

Finally...please remember

Whose data?
Whose voluntary time?
Whose money?
Whose body, tissue, sample?
Whose health?
Whose life?

It could belong to YOU!

The notes above come from a talk I gave at a workshop organised by Vitae Connections: Supporting Open Researchers: https://www.vitae.ac.uk/events/Vitae-Connections-Supporting-Open-Researchers

Twitter @Vitae_news #Vitae15 

Monday, 9 November 2015

It's a MOOC - Take a LOOK!

Updated in June 2016

The active involvement of patients, carers and the public with research has changed for evermore and, I believe, for the better. 

For us to understand what research is about we have often had to wait for a course to be delivered at some point in the future and hope that it would take place somewhere nearby. 

Today, sees the second outing of a free online course to help us understand clinical research. From the first run in November 2015, we can all get the information in a quite simple - a new, free* online course...

The course leaders, Allan Gaw and Fiona O'Neill, expertly lead and guide us through complex issues in a manner that I find illuminating and informative. I even appear to offer my penny's worth but please don't let that put you off.  

It has been developed by the University of Leeds, is open to all and is likely to run at least once a year. 

The short bite-sized film clips make it very accessible for most learners. You can get it on your smart phone, a tablet or your home computer - I have added the link to my desktop for ease. 

Best of all is that we get to chose when and where to watch - preparing dinner, doing the ironing (rarely), on a train or at present in a pub! 

The course offers the basics of what clinical research is and does but adds that further level by inviting us to think! We  can then join in conversations with other learners based on the experience of learning and not on qualifications and titles. 

The latest count is that over 3000 people are doing it! Why don't YOU! 

As you get hooked you may wish to join the online discussion or engage with the #whywedoresearch Twitter group to see the enthusiasm for research. 

The format and features of the Course allow us to choose the order of each week's topics, to move backwards and forwards at my pace and to repeat what I don't understand. 

The film clips are in short 5-10 minute slots which meant that I no realisation that I had spent up to 4 hours.

I chose to do each section in a week but I was free to take longer or cram it all into a morning. 

And...there is a Glossary, Transcripts of the programme, other Resources and useful Links. 

So, please join up and then you can take your time learning. 

Tuesday, 1 September 2015

Involve, Engage, Participate - Just Words?

Words and their meaning are always important. There is little purpose pointing at a 'tree' and calling it a 'dog'. 

Words in the world of research often have to be very precise to ensure that we are describing and measuring like with like to compare and contrast. The language has to be even and balanced for equipoise. 

It is also important to recognise and value the source and inspiration so I wish to thank Sarah Gibson who is writing an article for McPin about this topic. 

Just Words

The words INVOLVEMENT, ENGAGEMENT and PARTICIPATION are at times interchangeable in different contexts but there are some definitions that are commonly used. 

Personally, I tend to use the terms in a more precise manner when I am working with people talking about or working in research. It is a fine-tuning for ease of communication and understanding. 

‘INVOLVEMENT’, for me, defines and describes an ‘active presence’ where people who use services, their carers and members of the public have real say and influence in the decision making processes about their health including health research. There is a tangible sense of gaining equality or control. This does not always mean that I am in the room, at the table or necessarily right in my opinions. 

The NIHR INVOLVE promotes active involvement in research. Their website provides guidance and numerous examples of how the public of informing, shaping and influencing research ideas, design, delivery and dissemination on a very practical basis.

'PARTICIPATION’ is the word most used to describe people ‘taking part in a research study’ i.e. as someone who has consented to participate. 

A Person not a Subject

I still want to be treated with respect as a person not a ‘subject’ and to be able to make a proper ‘informed decision to consent’ but I will have no real influencing power over the medical intervention, whether I am on the control or treatment arm of the study or to say the time and place of taking part.

I do always retain the option to withdraw at any time. 

There is a certain ‘passivity’ about this relationship which is similar to that of a guide and tourist. There is no guarantee that you will hear about the destination reached by the researchers. . Research participants do, however, often mention that they learned more about their condition through the additional interactions with health professionals so there is a minor level of gaining control. 

Science and medicine organisations including The Wellcome Trust organise and support many very successful campaigns around public understanding. These have for years been described as public 'ENGAGEMENT' and tend to be about raising awareness, knowledge and comprehension about the role of science in everyday life. It all tends to be at the consultation end of the continuum (or the bottom of Arnstein’s Ladder).  

It doesn’t, of course, take long to look on any research website and see that that each of these words - involve, participate and engage - are completely interchangeable with people having different interpretations. There is nothing wrong, misguided or misleading about such descriptions.

The only value in any communication is that both sides are each clear about they mean and consequences of any discussion about what is intended.

However, in all spheres of endeavour, people are keen to know what they are doing, the boundaries of the task  and the no-go areas.  

In recent years, there has been a greater need to provide precision and clarity about the language that is used to engage, involve and help the public participate in research. 

Despite the precise division of these terms there has also been a growing understanding  that they are inter-connected and inter-dependent. 

If the public and patients are not given the opportunity to talk about research they are less likely to join a clinical trial or help shape the questions that need to be asked. 

Despite this pedantry, all that matters to easily find out...

  • What research is taking place and where?
  • Whether that research is appropriate and can I join a study?
  • How to provide feedback and information from my experiences?
  • How and where to work beside researchers to improve research?
  • Where to donate blood, tissue, data or my time?
  • How to raise awareness and funds of research?

Monday, 24 August 2015

Are Health Charities becoming more Patient Centred? (A Trip to Parkinson’s UK)

Winds of Change

The winds of change seem to blowing through a number of health and other charities. This freshening breeze is moving them away from ‘doing things for and to’ people towards greater partnership ‘with’ patients, carers and the public. This creates a climate that is more centred on the lived experience and knowledge of people affected by a disease, condition or illness.

This approach is welcome news for many of us who want to have more of a say and see real change from the charities we support and the way we lead our lives.

A recent article in the Guardian by @bensummerskill highlighted a number of the reasons that may lie behind these changes but for some charities it is simply seen as the right direction of travel. Charities that have a strong partnership ethos should be commended as I noted in a previous blog about Diabetes UK.

A Working Visit

Bec and Derek (Bec Hanley and I) had the pleasure of working at Parkinson’s UK in London with their User Involvement team at the end of July this year. It was really interesting to meet the group, find out what they are doing and learn from their experiences which are innovative, inclusive and imaginative.
Parkinson’s UK published an edition of their research magazine in 2014 that was actually guest edited by the partner of a person with the condition.

The title PROGRESS even makes it sound interesting and something I want to read. Its content is as much about all the people who make research happen (from patients to researchers), donations (from fund raising to brains) and the research (from practical living to stem cells).

Likewise, their quarterly member magazine, The Parkinson, has an editorial board which includes people affected by the condition and they have also started guest editing, having a chosen user guest edit the Summer issue.

This is joined-up thinking as are all of their information resources, which are systematically tested by users before publication.

User Involvement Advisors 

The User Involvement Advisors we met, a small and well-formed team, are actively involved in a wide range of activities with volunteers, fundraisers, staff, patient groups and communities. (The list written up on a flip-chart appeared endless so it will be good to se it typed up and circulated.) They are well supported in their work by Luis Perpetuo, User Involvement Manager.

Three of the team of four User Involvement Advisors are affected by Parkinson’s themselves, and show a commitment and compassion that is almost beyond measure. It was good to see that people whose voices are seldom heard have a presence and are central to user involvement at the charity.  I was pleased to see too that handling compliments and complaints are part of the team’s remit.

This commitment and compassion is equally true of people with other conditions yet what struck me most was the strength of feeling about the genuine nature of the relationship between the team and the organisation. There was an authenticity in the discussion that made it evident that there was real impact.

The  User Involvement Advisors spread the word about Parkinson's, talking to local patient groups and to the charity's fundraisers. They promote involvement with the charity to their peers, which has a different impact compared to other members of staff doing the same.

You can shop here

On the more unexpected level they have also developed significant photographic modeling skills of a tasteful nature as demonstrated in the magazines.

Thank you and keep up the great work!


What questions might this raise for the public who are engaging with other charities?

·       How is research forming an accepted and everyday part of a patient's journey?
·       How are you raising awareness about the need and value of research?
·       What are you doing to let me know about research studies that I can join?
·       Do you have a patient/carer reader's panel for the articles that are published in your organisation and on your website?
·       How are the views of patients and the public informing and shaping the work of the charity?
·       How are people with direct personal experience actively involved in the policy making and practice of your organisation?
·       Do you employ staff affected by the condition who may add to the effectiveness and understanding?
·       Do you have a patient as a guest editor for any of your publications?

If you are doing some or any of these I would really like to hear from you...

First response from Jon Spiers from AutisticaUK - A great website with good information about research http://autistica.org.uk

Wednesday, 3 June 2015

A Social Contract?

This was the topic #socialcontract15 for an event hosted by The Academy of Medical Sciences and the British Academy for the humanities and social sciences which I was invited to attend. 

The model, first described in 2008 by Dr Elias A Zerhouni, former Director of the National Institutes of Health, USA talks about 4Ps - Predictive, Pre-emptive, Personalised and Participatory. 

I arrived, looking forward to listening and contributing to the discussion but then when a speaker was unable to attend I was invited to take their place. 

Here is the talk I hurriedly put together.

"I lost my voice, I found my voice..."

These repeated phrase comes from a work of art from Glenn Ligon, the American artist.

He is not just speaking to me, with my throat cancer experience. He is speaking for, to and with people of different races, cultures, gender and sexuality. He is inviting us to think beyond the usual subjects who are interested in their health and wellbeing. His work is rooted in exclusion and inclusion. 

So, as we explore this concept of a social contract our greatest challenge is to ensure that we do not increase the gap in inequalities. 

It is right and proper that the Academies start from the perspectives of science and medicines but I suggest that the fourth P - Participation - holds the key. 

Too many patients feel they have no voice or have lost their voice in healthcare. We assume we can misbehave, get ill and the NHS is there for us. When we visit the NHS we are told what will happen to us.

Participation is not just taking part as a guinea pig, being given information or told to behave in a certain manner. 

Participation, for me as a patient, is about a series of active, continual dialogues which helps me understand my health and wellbeing. This has led to far less visits to any doctor since I was ill.

A social contract has to be about 'change' in approach, manner and behaviours. It needs to include...

Shared decision making as a real, honest and tangible reality
Rights discussed as a part of responsibilities whilst avoiding stigmatising individuals or communities
Open talk about the costs of healthcare and benefits of prevention

More patients have access to information through the use of new technologies and social media. These factors require a shift in the ownership of health, the balance of control and power.

I work one day a week for the NIHR Clinical Research Network advising on the involvement and engagement of patients and the public. I am often struck by the number of people I meet who have become actively involved talk about having a much better understanding of their health and the challenges facing research, medicines and science. They too talk about less visits to GPs.

By being offered a voice, people are able to inform the research agenda, to influence policy and practice which has helped develop better patient outcomes, avoid duplication and campaign for speedier research and quicker application. 

The public are extremely positive and highly supportive about NHS research as it provides more opportunities to find out about their health. 

The participation is genuine, meaningful and has added value. Our challenge in any social contract is to help us all understand the gains that can be accrued.

Cancer Research UK has recently published their plan Every Patient a Research Patient. 

Let me return to the artist, Glenn Ligon. The title of his exhibition is Encounters & Collisions and I suggest that we need to reach out to Encounter and talk with patients and communities and accept that there will be Collisions. 

Maybe we should look towards all meetings with the public to be opportunities to discuss health more than ill health

Tuesday, 3 February 2015

Answers, please!

Where might you find answers to these questions in 2015?

  • How can the public find out what’s going on in research?

  • How to find out what research has been - or is being - done on specific problems or conditions?

  • What other information is available on the internet?

  • Who can you talk to about research in the NHS locally?

  • What are the different ways in which the public can get involved?

  • How can the public influence research priorities?

  • How can the public influence research ethics?

  • How can the public get involved in commissioning or undertaking research?

  • How to apply for funding for a research project?

  • How can the public get involved in the process of interpreting results?

  • How can the public get involved in disseminating results?

  • How can the public get involved in making sure that the NHS takes account of research?

  • What support is available for the public who wish to be involved in NHS research?

  • Do the public who want to be involved need any particular skills or qualifications?

  • How can you access the training that is available?

  • How to involve the public who are often left out?

Pleas note that for ease of reading I have changed the words ‘consumers’ to the public; ‘R&D’ to research; and ‘InterNet’ to internet in the above examples to bring it up to date.

These questions come from a little booklet I found in my loft recently. Better still, each question had a short pithy answer to help the public.

The booklet is titled...

Research and Development in the NHS - How can YOU make a difference?

It was written, in 1999, by the advisory group Consumers in NHS Research which later became Involve.

So, where is today’s little easy read guide?

How can we all work together to provide this information?

and...are there more appropriate questions we should be?

I would certainly want to add a question about taking part in research, inviting comment about the experience and finding ways to thank each other.

Wednesday, 14 January 2015

How can we demonstrate the benefits of involving the public in research?

NHS Research and Development North West Catalyst Event

Over 100 people, the public and from research, gathered for an Open Space workshop at Aintree. 

The question for the day was - How can we demonstrate the benefit of involving the public in research?

Each word conjures up many different perceptions and understandings - HOW, WE, DEMONSTRATE, BENEFITS, INVOLVING, the PUBLIC and in RESEARCH?

Let me invite you to think differently by changing one word in that question so that it reads... How can we demonstrate the benefits of involving the public in SPORT?

This change in the question immediately makes us want more information, to seek much further clarification, to be far more precise?

We would probably begin by asking which sport. So what is the CONTEXT?

We might ask whether it personal fitness or part of the team. So PURPOSE is important. Are we part of a team (from cleaning the boots to playing on the field), watching (home or at game), helping (local team or Games events), personal fitness (in general, following illness or accident, loose weight). Ewe need to be far clearer in defining the PURPOSE

How many goals am I expected to score? Am I coaching or driving the coach? Am I helping organise TASK 

I blog as an individual, I may be part of a team when I am working with researchers, I am part of an organisation in my work. 


You cannot measure someone's benefit of taking part in football training if you take them to a badminton game. Yes, there might be a benefit of involving them in sport but it can only be measured against by definition of what they choose to do and how effective it has been. You cannot measure the benefit of watching the game against the physical taking part.
  1. Place the involvement in CONTEXT (in terms of the organisation, the research, the people)
  2. Define the PURPOSE 
  3. Make the TASK specific and produce an EXPLICIT AGREEMENT 
  4. Assess the BENEFIT to the research, the researchers and the public
Only then can you effectively ASSESS the value and benefit (research, researchers, public)

1. Football or badminton; is it active involvement or active engagement
2. Am I a supporter, am I playing, refereeing or managing?
3. What is is expected from me and of the others involved? time, costs, commitment
4. Am I fitter? Have I enjoyed taking part? Has my team won? Are we celebrating?

And in all of sport we begin by giving people choices about what the individual wants to do?

Let's, at least be clear about the game, the rules we should abide by and opportunities that we have to contribute and take part in a way that best suits research and our needs. Let us work together to offer a broad range of opportunities to suit the needs of research and those who get involved.

It is also really important to remember those whose voices are least heard and communities who are unrepresented.

Visual recording by morethanminutes.co.uk @visualminutes

Twitter: @NHSNWRD

Linkedin: NHS R&D North West