Bad Pharma - by Ben Goldacre

Excellent new book by Ben Goldacre which provides many great examples as to why it is vital to have patients and the public interested and involved in all aspects of research. It is well researched and cogently argued.

Bad Pharma by Ben Goldacre
Published by 4th Estate ISBN 978-0-00-735074-2
The link is Amazon UK - http://www.amazon.co.uk/dp/B008PCVGKI/ref=rdr_kindle_ext_tmb

Poem

How many post it notes will be written?
How many consultations will be held?
How many workshops, courses, events?
How many flipcharts, mind maps, thoughts and ideas?
How many more meetings, committees and boards?
How many agendas, minutes and matters arising?
How many video, telephone, webinars will take place?
How many holds in my diary, things to do lists?
How many emails, reminders and texts?
How many days wasted talking....


when we could just have got up and turned on the light!

Performance

Performance – reflections on the Olympics

Attitude! – There was something about the positive mind set especially amongst the Paralympians. A non-acceptance of can’t do, a willingness to take on a challenge, get on and do.
As patients we are often viewed or written about as victims of a disease so there is a message there about living every day to the full despite any limitations. Like many others I dislike the dreadful term ‘survivorship’. Living with and beyond an illness is far more acceptable so being actively involved and engaged in all aspects of my heath are the keys: Challenge – Aspiration – Achievement!

Goals! The setting of targets is a crucial factor in sport. This applies to us as patients. Our goals are shared decision making, better treatment, the best evidenced based care developed through quality research! But we also need to be clearer about what we are targeting at any point we get involved: Purpose – Impact- Benefit!

Approach! The manner in which the athletes worked together and shared training facilities across both Olympic Games. The Cycling Team was 'one' team, sharing the same resources, coaches and leadership resulting in a rich display of medals and personal and world records.

As patients the issues we face are faced by many other patients yet we too often stay together with others of the same disease. It is the sort of tribal behaviour that we accuse the health professional of doing. Being actively involved is being involved and research is research: Commonality – Shared-decision-making - Partnership

The Building Partnerships course, bringing the public and researchers together, was developed by Macmillan it is a great example partnership (Well, I would say that as I am one of the facilitators!!!)

So…..

How do we inspire people - enable their capabilities?
How do help people develop knowledge and skills?
How do we build from people’s own experience?
How do we help people achieve their ambitions?


Programmes on TV such as Grand Designs, Celebrity Master Chef and Strictly Come Dancing illustrate how people can learn very fast, take on exceptional challenges especially if they have a passion or dream, desire and especially a plan.

People want to know about Research!

The National Cancer Patient Experience Survey is now published 

Thanks to the Carolyn Morris and others at the NCRI Consumer Liaison Group, Professor Matt Seymour and the NCRN for getting questions about research asked...

Of the 33% of patients who were asked whether they would like to take part in cancer research - 95% were glad to be asked.

Of those who were not asked to take part in research - 53% would like to have been asked.

I believe that these figures clearly illustrate that patients are keen to talk about research, participate in studies and will need information to help. ten years ago only 1 cancer patient in every 27 was taking part in a research study now it is nearer to 1 in every 5 patients. 

Now that we have asked these questions of cancer patients we need to be asking other patients about whether they are offered the CHOICE of taking part in research.
However, even for cancer patients it is far from a perfect picture when you look beyond the headline figures.


A more detailed summary of the responses to the research questions...

Discussion of Research

There was a significant variation in the proportion of patients saying that taking part in research had been discussed with them. Scores ranged from 39% (breast cancer) to 15% (urological cancer).

Results from individual Trusts show that there are significant variations in the proportion of patients saying taking part in cancer research was discussed with them. Scores in Trusts ranged from 14% as the lowest score to 62% as the highest Trust score.
The 20th percentile threshold is 24%; the 80th percentile threshold is 37%.


Patient Attitudes


53% of those patients who said they were not asked, said that they would have liked to have been asked; 47% said they would not have liked to have been asked. Findings by Tumour Group There was a significant variation in the proportion of patients saying said that they would have liked to have been asked. 

Scores ranged from 64% (brain / CNS) to 47% (skin and urological cancers).
 95% of those patients who had research discussed with them said they were glad to have been asked; 5% said they were not.

Findings by Tumour Group 

There was some variation between cancer types but statistical tests indicate that the differences between cancer groups are not significant overall.
Findings by Trust Results from individual Trusts show that there are significant variations in the proportion of patients saying they were glad to have been asked. 

Scores in Trusts ranged from 85% as the lowest score to 100% as the highest Trust score.
The 20th percentile threshold is 93%; the 80th percentile threshold is 97%.

Other key findings from the survey are that patients are:  

Given clear answers – 91% (91% in 2010) of patients saying that they received understandable answers to important questions all or most of the time from their Clinical Nurse Specialist;

Treated with dignity – 94% (93% in 2010) of patients saying that they were always given enough privacy when being examined or treated;

Seen quickly – 83% (81% in 2010) of patients feeling they were seen as soon as necessary by a hospital doctor;

Treated with respect – 83% (83% in 2010) of patients feeling they were told sensitively that they had cancer;

Given a choice of treatment – 84% (83% in 2010) of patients being given a choice of different types of cancer treatment before their treatment started.

#Q4Patients - questions to ask

This weeks's Tweets continue the theme of QUESTION FOR PATIENTS - #Q4Patients - but are more about the research itself.

 Last week's tweets were all about QUESTION FOR PATIENTS - #Q4Patients - What questions should the public be asking when we visit our GP...

1. Ask your clinicians about what research exists about your condition, illness or disease. Starting the discussions
2. Ask all of your health professionals (nurses, doctors, consultants, etc) if they are actively involved in research. Showing interest
3. Ask your clinicians to explain the research into your condition. Share responsibility
4. Ask about current studies that are taking place? Become a Study Participation
5. Ask what will they are going to do to let you know? Be a demanding Customer


 At the end of these 10 Questions I will add some further thoughts.

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: faye.bastow@nihr.ac.uk

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

• Your Treatment Choices 

• Understanding Diabetes Research - Research for Me 

      and from America a site that explains about research

• The Centre for Information and Study on Clinical Trial Participation 

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. Roger.Steel@nihr.ac.uk 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

How We Improve Research By Involving People #HWIRBIP

How We Improve Research By Involving People #HWIRBIP 


Thank you for following the theme this week. Over the weekend I shall rearrange this in the correct order.


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 examples. 

The National Institute for Health Research - Clinical Research Network is currently developing an electronic method of collecting this data. Roger.Steel@nihr.ac.uk 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

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

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

BLOG: 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 Involve People in the planning stages researchers begin thinking about how they might be informing patients.
• By Involve 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


Your Treatment Choices 
Understanding Diabetes Research - Research for Me 




and from America a site that explains about research
The Centre for Information and Study on Clinical Trial Participation -

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

This the second #HWIRBIP (yesterday's is below) 

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

What more could we do? Tell me you views! What have I missed, forgotten or simply got wrong! What is your opinion.....

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

This is the first in a series of Tweets with related Blogs that I will be posting this week. There all on the topic of How We Might Improve Research By Involving People. 

Talking is key. No matter how many adverts, social media dialogues it comes down to talking. 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 patients are in a confused and vulnerable state. It is no wonder we then think that research is something odd. 

Research should be as normal a part of routine care in every 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. 

Signs ought to point out that having some students observing and learning is normal albeit we will always be asked if that is acceptable. It is mainly through research and learning 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: faye.bastow@nihr.ac.uk

These are great steps forward but what more could we do? Tell me you views! 

What have I missed, forgotten or simply got wrong! What is your opinion.....

Please join me tomorrow for the next  #HWIRBIP