Why can't the public have more of a say in research?

There is something peculiar about much of the world of research that appears, at times, to separate the public from the work that is carried out in the name of research in the NHS. This is mainly epitomised in the use of the term 'trial subjects' when speaking about people who have volunteered to become research participants. It is a separation that seems unnecessary and is equally represented in a culture and attitude that does things to others rather than with them.

I can appreciate the need for objectivity, distance and the avoidance of bias but too often the questions that are asked, the priorities and the decisions about what is researched are set by researchers, the academics and government. Research is too centred on the researcher's views rather than on patients' experience. 

At this point I should make clear that I am a great supporter of academic, laboratory and other forms of research. It is unlikely that I would be still be alive were it not for research into the types and size of cancer tumours that can be treated by radiotherapy. I am not a researcher though I often swim beside them in the same waters as I encourage people to become actively involving people in research.

But, when will it truly be the public's turn to inform, influence and form research that is relevant to their needs? How do we make that step change to ensure that research in the NHS properly reflects the needs of those who may in future require treatment and care as much as those with personal direct experience?

My questions are less critical and intended as an open invite to consider how we can better gain the views of the general public. 

The involvement of patients, carers and the public, in recent years, has helped to alter that culture and I believe, greatly improve the climate. Patients are included in many meetings, our views are taken more into account and there is increasing evidence of the impact of this involvement in improving research. Yet despite the development of involvement we witnessed a reduction in psycho-social research which often addresses many of the real needs of those people directly affected by a disease let alone what the public might say.

And, at this point, I stress that I am an advocate for involving people in all aspects and at all levels of research. It is what I do. I assist and promote active involvement in my role as an Associate Director with the National Institute for Health Research Clinical Research Network.

It is relatively easy to involve patients, especially those who have their own communities by which I mean a sense of belonging with an illness, condition and/or disease. Rarer diseases and research about other illnesses have begun to come more to the fore in discussions. Even so we not appear to have an equal say in determining what is researched.

There are examples of gaining wider perspectives on research. The James Lind Alliance brings patients together with researchers, through Priority Setting Partnerships, to identify unanswered questions. The Bob Sang Open Space provides room for dialogue across public services. Y-Touring theatre company take issues into local communities through their 'Theatre of Debate'. 

Yet, there needs to be something more. On a personal level I am unable to think about what expectations I might have had before I got involved, ahead of my cancer, when I didn't think about research. Does it entirely require a particular experience to have an opinion?

So, how might the public have more of a say in research? Where are today's town criers? How might we create a public call on ideas for NHS research. Is social networking, crowd sourcing, the answer? Should we be making better use of engaging the local media?

What questions would you like to see answered? What priorities would you set? How would you spend public money?

All I want from research

Well, not necessarily ALL I want from research but at least for starters....

I always imagined that if a research study was developed and adopted by the NHS that I would be informed. I would be particularly interested in a study that looked at longer-term effects of radiotherapy on patients with cancer of the head and neck. I discovered that I was wrong.

As a Patient in the NHS

I am and always have been a patient in the National Health Service. (My brother was born just before its inception and we still have the original receipts for the cost of birth.) I, along with others, was born afterwards and was given a unique number. 

As a baby my parents were invited to bring me along for various injections. I have given my personal details on many occasions, changed and corrected them as appropriate. I have a card with my number and there is a file in my doctor's surgery.

In my later years my birthdays heralded requests to come in for check ups and then more recently to provide a sample for the bowel screening programme.

Whose information is it?

I have, I believe, fulfilled most of my role in providing information yet the NHS has a confused view of what it can and can't inform me about. It seems able to contact me when it needs something but less able when I might want something.

The reality is that the strange rules of data protection are used to prevent information being passed to me about relevant research studies, clinical trials and other research opportunities. Yet most people I speak with naturally assume that they will be informed about research.

I have the same responses when I hear that tissue samples, biopsy material and removed tumours are routinely destroyed unless prior consent was provided. It is both wrong and a waste.

A Constitution Right?

The NHS Constitution states that people should be informed of research that is appropriate. Yet how do we achieve this ambition?

I would like to see the NHS have a system that allows me to register my interests in research, my desire to have tissue used and to maintain regular engagement and contact as to how I might get further involved.

Need for a Register

I want to be able to record my particular interests for research. These could likely be assumed to be for cancer especially for head and neck patients. However, the reality is that I would be keen to know about research for arthritis, osteoporosis, psoriasis, mental health, social care amongst others.

I would be keen to indicate a willingness to participate in different types of research - clinical and social care for both qualitative and quantitative studies. I would be content to provide broad data about my age range, general health and highlight an interest in research that might take place in my region and to state how far I would be willing to travel.

I would happily consent to an NHS approved employee looking at my patient records. 

Liberties or Opportunities

Some people will say that this could be an infringement of my civil liberties for someone to look at my records yet anyone who purchases anything from the Internet will suddenly see further recommendations for similar goods appear in pop-up windows or as inserts in other regularly visited sites.

Certain large supermarkets already give us special offers on our favourite items. Insurance Companies who ask our mother's maiden name are more than likely building our family trees as I write. 

I am not suggesting that we adopt the same dreadful commercial practices yet the elements of customer choice, meeting customer need and being responsive to demand must be given higher priorities. This is especially true if we want to have best evidenced based treatments and care delivered in our homes and clinics.

Information Needs and Wants

So, if I am willing to express my interests and needs I should expect to receive information about research in general, about studies that are particularly relevant. I should similarly expect to receive the results of any trial in which I participate. All information must be in language that is generally understandable by members of the public.

Such a register of interest is potentially of value to patients as well as researchers and ultimately the NHS. It may only provide a long list of possible research participants yet it offers the potential to increase the numbers who might be eligible to take part.

Making the register part of the NHS means that we have certain controls over protection, patient safety and could tie it into regular GP appointments. Promotion of the register through social media may additionally reach people who would not normally become research participants. Equally there is the potential to promote research through a register in specific communities where there is little or no participation.

I would also be keen to state on any register my willingness to become actively involved in research design, delivery and dissemination.

I should also expect that voluntary sector to be playing a far greater role in talking about the value of research in general, gathering patients views for research and lobbying the NHS to apply research in practice.

Involve the Public 

The targeted involvement of patients, carers and the public can be beneficial in providing insight that can inform research leading to improvements in the quality of questions, better recruitment and hopefully the application in improved treatment and care.

UK Clinical Trials Gateway - consultation

Simon Denegri Has launched a consultation about the UKCTG.Please circulate this widely and encourage people to comment. Have your say about the UK Clinical Trials Gateway (UKCTG): j.mp/L0vsU5 or on my blog: j.mp/LbuWc9

Walk in the Woods

Went for a walk in Thieves Wood in Nottinghamshire.

Great for clearing the head, giving rise to ideas and generally refreshing the soul - took my iPad so that I could do some work.

So good day all round.

Gaining skills for Chairing Meetings

Working for Macmillan Cancer Support with the Thames Valley Cancer Network to facilitate a course on Chairing and Facilitation Skills.

This is a very interactive workshop helping participants to consider the purpose of any meeting, the role the person who is chairing can have in setting the vision, establishing the principles and values as much as getting through the business.

Effective and good chairing is more akin to hosting a meal, coaching a team and conducting an orchestra.

There are different stages: invitations, menu planning, considering the needs of those you have invited; there are the starters (welcome, introductions and the previous minutes), the mains (items for information, discussion and decision) and the dessert (highlighting items for future dialogue).

Caring for the individuals who attend the meeting and ensuring that everyone gets an opportunity to talk in a key element of building a team. Just as asking them to go further is an essential feature.

As with any orchestra, practice and rehearsal of issues are important but it is the conductor who sets the tone, builds the atmosphere and helps make the sounds of individual musicians and sections to come together.

The workshop will look at room set up, agenda setting, minutes and actions along with follow up and preparation for the next meeting. A little bit of time will be spent on people's behaviour.

Hopefully a good day.

Reflections on lay/public representation on a Board

The following personal reflections are my attempt to record why I take part in various committees, the role of those committees and why these are different.

Personal statement

• I am very keen to see that people are told about research opportunities that are relevant to them in the NHS and are informed about the results of studies in language that is clear and easy to understand. (PARTICIPATION in Research)
• I am particularly committed to ensure that people are actively involved in all aspects of research (design, delivery and dissemination) and believe that research which asks questions that are relevant and appropriate to patient experience are more likely to recruit and then be used to improve NHS treatment and care. (Active INVOLVEMENT in Research)
• I am highly supportive of engaging the public in discussions about science and research as a means of bridging the knowledge gap especially as biomedical studies get more complex. (ENGAGEMENT in Research and Science)

It is in my opinion as easy as PIE - Participation, Involvement and Engagement. For too long we have seen these separate slices of the pie as entirely different. It is time to bring them together.

Thoughts on Board membership 

I am conscious that a Comprehensive Local Research Network Board has a focus around the delivery of research studies that subsequently narrows the scope of what I want to achieve within my areas of interest though it is still possible to help inform, form and influence by contributing in discussions.

The following notes attempt to capture some of the areas that the presence of a ‘patient / lay representative / adviser’ can help to make happen. We can contribute to

Changing the culture - encouraging people to work in partnership both as a board and across organisations for research; helping make research part of the normal patient journey; attempting to make the research language more understandable.

Being open and accountable – seeking clarification about the role of the board; about the finances; about research activity across the three counties; enquiring how we are telling others about the work being done across the CLRN.

Reminding of purpose – inviting the board to remember why we are doing what we are doing; seeking to ensure that patients are being told about research opportunities; providing a lay opinion – an external pair of eyes; a ‘consumer voice’ to the proceedings.

Making connections – helping to make links and being in touch with local patient groups and organisations; giving presentations and talks locally about participation in studies, active involvement in research and engaging with communities across the region; making strategic links with national priorities for research and involvement especially to improve patient access to research through local NHS services

The principles and values that I have begun to identify are:

·       Supportive of high quality research in the NHS

·       Respecting others

·       Promoting transparency

·       Commitment to equality and diversity

·       Offering ideas and seeking solutions

·       Challenging complacency

I would welcome comment on these observations and would be pleased to receive other people’s views.

I will be adding - Some Questions to Ask - soon.

On the Move

Blogging represents a whole new world. I have just downloaded the Blogger App for my phone.

I am sitting in my car just about to attend the Trent Comprehensive Local Research Network (CLRN) board meeting and I am blogging!

Trent covers Nottinghamshire, Derbyshire and Lincolnshire (NDL) so is quite a large area will very mixed needs.

Involving Researchers

So how do we better engage and work with the research community and help them to better understand the value of involving the public in their work.


Met yesterday with a number of the leads for involving people in research across the East of England - Doreen, Jacqueline, Katerina, Iliana, Andrew and Nicola. Wonderful group who discussed what researchers might gain from attending workshops and courses about working together with the public.

 Our first draft lists opportunities to

• share your enthusiasm and commitment to research with members of the public
• discuss your current ideas and work
• meet with patients, carers and others who are interested in getting actively invalid with research
• learn about partnership working with the public in a safe and non-threatening manner
• exchange ideas, experiences and good practice of active involving the public
• find out how you can best support each other 

• improve aspects of your research proposals
• make new contacts from across the East of England

Edinburgh then Nottingham

In Edinburgh on Monday and Tuesday working with Bec Hanley, TwoCan Associates, for the Clinical Research Training centre in Edinburgh for Michelle Evans.

Day 1 workshop Involving Patients and Public as Partners in Clinical Research included  six members from the Public Involvement Group at the Chief Scientist Office, Scotland. It was a real pleasure to work with them and the other attendees.

The next day we facilitated a structured discussion for experienced people in patient and public involvement around developing the work and moving beyond the stereotype of placing two people on a committee. It was brilliant listening to what people are doing north of the border.

I find it really interesting that despite all the booklets and advice on involving patients, carers and the public in research, most people just want to be helped to take their first steps, learn what to do next and/or reflect on what did or didn't go went well. They no longer want or need to be told.

Perhaps too much information has been provided like car manuals to read or guides to driving instruction when most people actually want to know where to put the key, how to operate the clutch, press the accelerator and use the brakes. This seems especially true for members of the research community.

We may have spent too much time providing workshops for patients, carers and the public at the expense of engaging the researchers and NHS colleagues in what we are trying to achieve. 

This work with TwoCan Associates re-dresses the balance.

On Wednesday, the Queen was visiting Nottingham and our granddaughter was playing in the band. Wonderful day ended by being the regular drama assistant for the drama club at Riverside School in the city.

Talking to myself

I am coming to the conclusion that having a blog is a little bit like talking to yourself - which I do all the time - so it sort of seems normal. That and the fact that nobody seems to be looking at the BLOG, reading or commenting.

I think that I am beginning to get the hang of the layout so have put some factual information along the top under Sources of Support & Patient Organisations. The Updates are a collection of things I have come across or been sent in emails that I think are interesting.

I will try to do an Update every couple of weeks then collate into a Monthly or Quarterly bulletin of information under different categories (Research, Commissioning, User Involvement, etc)

As to by new 'blogging career' - I will be officially starting this coming week commencing Monday 11th as I return to work with some work in Edinburgh, a royal concert, then off to Cambridge and finally a Comprehensive Local Research Network board meeting.

I shall comment and reflect on each as they take place....

Started yesterday

Started my blog yesterday the 2nd June and then somehow erased the page. Added loads of interesting websites to help navigate the world of research.