Sunday 8 July 2012

The week's discussion on How We Improve Research By Involving People #HWIRBIP 

Thank you for following this theme. Each day I chose certain key elements on the theme of how we improve research by involving people. This is an edited and corrected version.

The key elements I chose were: TALK - COMMUNICATE - INFORM - AGREE - SHARE

On Monday: #HWIRBIP 1. TALK Let's talk about research being part of routine NHS treatment and care.

Talking is key. No matter how many adverts, social media dialogues it all comes down to talking, person to person. We need to start talking about research as a commonplace activity within the NHS. We need to talk to each other, to families, friends but especially with the general public.

Too often research is the word mentioned following the diagnosis of a serious illness when we as patients are in a confused and vulnerable state. It is no wonder then that we think that research is something odd. 

Research should be as normal a part of the routine patient pathway as the taking of blood samples. It should be mentioned much earlier in the process with GPs and nurses. Some hospitals are now stating in appointment letters that as part of their diagnostic visit that informed consent may be sought to use tissue or other samples for research. Why is this not on every hospital appointment letter?

'We do research to find the best treatments and care for patients' - I have said for years that I would like to chisel these words at the entrance to every hospital, clinic and doctor's surgery. There ought to be posters throughout the hospital, in waiting areas and clinics. We should have flags and banners.

Signs ought to point out that having medical students observing and learning is normal practice. Of course we should always be asked if that it acceptable but the default setting should be an expectation of learning. It is mainly through research that we will see improvements in treatment and care. 

By INVOLVING PEOPLE we enter a dialogue that is richer than just placing someone on a committee. Talking to each other about research in the NHS is key. 

The National Institute for Health Research - Clinical Research Network (NIHR CRN) has been working with The GUARDIAN and their Healthcare Network - Clinical Research zone. The discussion Engaging patients in research is very much worth reading. 

Scotland has an advertising campaign called Get Randomised to get people talking about research. 

The NIHR CRN has recently begun to invite people who would like to speak to the media about NHS research in England, to become ambassadors. For more information contact:

Each of these initiatives spreads the word about research.

On Tuesday #HWIRBIP 2. COMMUNICATE. Let's communicate about NHS Research in language that is clear and understandable.

Research has a language all of its own for a good reason. It is vitally important that the questions that are asked are concise. It is necessary that the methods that are used are effectively measured. It is right that researchers present their findings for challenge with their colleagues.

However, such definition and precision often means that it becomes removed from the actual relevance and meaning for patients. The study or trial is given a title often made up of a combination of letters. The explanation is at times of a two armed randomised study etc, etc. The so called 'lay summary' is often a cut and paste from the scientific or medical statement in the explanation.

This is NOT communicating! This IS confusing! How can the person make an informed choice in such circumstances?

It is much better than it was in the past. Many more researchers seek the advice of the Research Design Service (RDS) and as a result they are presenting information in better ways. The variety of format and styles are better suited to different people but many are still poor.

The RDS North West offers some good information on involving patients, carers and the public in research.  We need to ensure that researchers are Involving People at the earliest opportunity in helping to consider not only WHAT is in the Lay Summary and HOW to speak with potential participants.

There are an increasing number of local and regional patient/lay research panels where researchers can seek advice and help. The Comprehensive Local Research Networks (CLRN) should be -ble to provide more information. The Coordinating Centre website has a map showing the CLRNs.

Arranging a meeting with local self-help and support groups can provide opportunities to practice talking to patients about research. Carers of people with Dementia have given training courses on what it is like when recruiting patients. Just come and ask.

On a much broader sense we need to communicate in other ways, using social media. There is the Cafe scientifique but where is the cafe-research, the cafe-questions?

@kykaree responded to yesterday's tweets and mentioned being approached to take part in a clinical trial when she was admitted to hospital during her pregnancy. Follow @kykaree for more information

From Wednesday #HWIRBIP 3. INFORM. Let's inform people about NHS research that is relevant to them 

Last week in my blog I wrote down my list of expectations of NHS research. I expressed my disbelief in discovering that the NHS would not INFORM me about any relevant research. 

Efforts are now being made to enable people to be informed but is not happening quick enough.

The NHS Constitution (page 54) states clearly that there should be...

"Procedures to ensure that patients are notified of opportunities to join in relevant ethically approved research and are free to choose whether they wish to do so. Research is a core part of the NHS. It enables the NHS to improve the current and future health of the people it serves.

The NHS will do all it can to ensure that patients, from every part of England, are made aware of research that is of particular relevance to them.  

The National Institute for Health Research has developed a more connected system for research in England. Increasing the numbers who take part in studies has been a key target but we could do more if local hospitals and clinics helped to inform people about studies in their areas.

The UK Clinical Trials Gateway (UKCTG) even has an APP for smart phones.

The NHS Information Strategy provides insight into what it will be like in the future but as patients we need to more demanding.

It is possible to involve local patient groups in asking questions of their local research networks - what are they doing collectively to tell people about research opportunities that are relevant to them, how are they working together to achieve the promise set out in the NHS Constitution?

We should be asking LINks and Local HealthWatch to ask the same questions
We should be making greater use of the charities and voluntary sector.

  • By Involving People in the planning stages researchers begin thinking about how they might be informing patients.
  • By Involving People in the planning, design helps spread the information about up and coming research projects. 
  • By Involving People you are more likely to get the interest from the local media to have a Research Matters article

There are some other good  examples of how people are being informed

      and from America a site that explains about research

On Thursday #HWIRBIP 4. AGREE. Let's agree what we expect from each other in NHS Research.

When I volunteer to participate in research what do I get in return. What is the deal? What should we as patients expect when we AGREE to take part.

Informed Consent - should be more than a signature. The agreement will inform us about the study and what we are agreeing to but surely it should include some responsibility on the researcher part to keep us informed.

We are people not just trial subjects although the term is still in use today. We are people who have volunteered to get involved with research. Whether we are participating in a trial, assisting researchers or talking about research we need to be much clearer in our expectations of each other.

It is nowadays about research with people rather than to people. In 2012 it should be about shared-decision making about what should be researched, with co-design and co-operation throughout the development, delivery and dissemination of research.

Let us seek to AGREE that all patients should be kept informed about the progress of a study, be informed of the outcome and trial results in language withhold is clear and understandable. And we should look toward capturing the customer experience of being a trial participant - how we asked, communicated with, the environment, respect and dignity.

By Involving People...

  • Preparation can be made for that longer term relationship
  • The Lay Summary can outline how contact be maintained
  • The experience as a whole can be considered

On Friday #HWIRBIP 5 - SHARE. Let's share our knowledge and experience of NHS Research with each other 

For a short time when I began this journey I thought it was all about researchers benefitting from some element of my experience of being diagnosed and treated for a life threatening illness. It appeared a one way street.

I quickly realised that my experience as a teacher, group working and behaviour management could be beneficial in a culture that was mainly silo based. My manner of being positive and seeking solutions also seemed of value and that my patient experience was the fulcrum to getting actively involved.

Since then I have become appreciative of research, the research community and found more allies than enemies wanting to improve studies, the system and the application of findings to make a difference to patient treatment and care.

The question remains - Whose research is it anyway? Does research belong just to researchers or should the public have a say in what questions are asked, the priorities that are set and the nature of the research study?

We have moved beyond mere consultation and are I believe moving through involvement to a place where there is a shared understanding, greater mutual respect and many common goals. Of course, there will be times when we disagree with one and other but that should not stop us working together.

The course about involving patients and the public in research supported by Macmillan Cancer Support is now a generic workshop suitable to all patients and researchers. I have been delighted to return as a facilitator on this course. It is called Building Partnerships for the simple reason that it is about working together.

Sharing examples of people working together now exist. The INVOLVE Exploring Impact report being an excellent example. The NIHR Clinical Research Network report Making the Difference captures further stories. 

The National Institute for Health Research - Clinical Research Network is currently developing an electronic method of collecting this data. is leading this piece of work

By Involving People in SHARING we...
  • Spread the word about involving people is making the difference
  • Build the evidence base of effective involvement
  • Encourage others to do the same

"Sometimes we need stories more than food to stay alive" 

                                                  Extract from Crow and Weasel by Barry Lopez

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