Thursday 15 November 2012

Research and Commissioning



Please note that I will be adding further questions to ask - if tweeting include #involve2012. Commissioning is fundamentally about spending money so I thought I would throw in a few coins especially after Sir Iain Chalmers' blistering attack on waste in research at #involve2012. So, I have added some questions to ask...

The new Mandate to the NHS Commissioning Board was published earlier this week whilst we were all at INVOLVE


The Mandate sets out the objectives for the NHS and highlights the areas of health and care where the Government expects to see improvement. It focuses on the areas that matter most to people:

RESEARCH is mentioned as follows...


6.2 The objectives in this mandate can only be realised through local empowerment. The Board’s role in the new system will require it to consider how best to balance different ways of enabling local and national delivery. These may include:

·       its duties to promote research and innovation – the invention, diffusion and adoption of good practice;


7.2 The NHS Commissioning Board’s objective is to ensure that the new commissioning system promotes and supports participation by NHS organisations and NHS patients in research funded by both commercial and non-commercial organisations, most importantly to improve patient outcomes, but also to contribute to economic growth. This includes ensuring payment of treatment costs for NHS patients taking part in research funded by Government and Research Charity partner organisations. 




We need to push the NHS to make sure that research opportunities are explained to patients.

Please check with your local Trust and new Clinical Commissioning Groups to make sure that they are complying with their duties and whether they are reporting activity.


All NHS Trusts have a duty, through the NHS Constitution, to promote opportunities for patients to take part in clinical research studies. 

The National Institute for Health Research provides support for the delivery clinical research trials in the NHS in England, and there are now new measures of how individual Trusts are delivering on that duty across the different therapy areas.

THE KEY REPORTING AREAS are

1. How many clinical research studies the Trust took part in last year 2011/12? And currently?
                                                                                                                                                    
2. How many patients it recruited as a Trust?

3. How much research is being done across a range of medical conditions?




Clinical Commissioning Groups (CCG) are committed to promoting patient recruitment to and participation in research according to section 4.2.2 of the authorisation process.

A statement we might expect to see from CCGs 

“We declare that our CCG understands and will comply with our statutory responsibilities regarding promoting research; and that we are committed to following the policy of ensuring that the NHS needs the treatment costs for patients who are taking part in research funded by Government and research charity partner organisations”


Some Useful Sources of Information


A Clinical Commissioners Guide to the Voluntary Sector

Resources for Health and Wellbeing Boards http://goo.gl/aCz41

Healthwatch England http://healthwatch.co.uk

NHS National Commissioning Board  http://www.commissioningboard.nhs.uk






Tuesday 13 November 2012

Patient & Public Involvement - A Waste of Time?







Patient and public involvement - a waste of time? Have we squandered opportunities? Have we drained hope from many of those who became involved?

Well, to be quite honest, I still attend too many meetings, review too many research proposals, see and hear examples of tokenism, inappropriate behaviours and quite frankly dreadful involvement. Pleasingly, there are more and more examples of good practice but they are far from universal.

I have been involved for over ten years and I believe that many things have got better. The culture is much improved, the climate is more friendly and we are increasingly gathering evidence of impact, BUT, we have to find a way of...




Improving Research - Together


If we are going to transform research we need to work together. We should start this dialogue by turning the page from the separate worlds of the patients/carers/public on one side and those people employed in research on the other. We need to avoid labelling ourselves with our illnesses and work together for all those who currently need care and treatment.

Quite simply, we should all want to make a difference, whether by working in research, raising funds through various activities, being actively involved in shaping studies or taking part as a participant in relevant clinical trial. We ought to hope that our actions lead to the developments in research and do not want to be part of any tick box, duplication or unnecessary activity.

The world of research is far from perfect.

Ben Goldacre's excellent book Bad Pharma catalogues major issues around missing data, bias in publication and lack of openness that are an indictment of outrageous and unacceptable behaviour akin to many other recent public scandals. These must be taken up, challenged and addressed. 

There are, even now, a few people who seem uninterested in dealing with these problems, some are more interested in working on their own, gaining kudos from published papers, acquiring funding for their institutions or organisations rather than seeing the greater good and potential of collaboration. 

Similarly, I feel that charities that do not fully involve people in helping to identify the priorities for research are morally wrong. The charity rules of 'public good' should not be interpreted as just doing things for or to people but 'with' the public. 

These instances, however, should not stop us from working together especially with those who want to see improvements. In fact they should actually force us to work more closely to tackle these issues, correct the wrongs and move forward. This does not mean that we have to necessarily agree all the time yet we can learn from each other.

The direction for this transformational approach ought to be a statement of on the overall importance of honesty and transparency in research, about the need for high quality studies and the value of systematic reviews.

It is then crucial to identify those challenges that we have in common and work in partnership to create, a movement for change leading to improvement in the experiences of treatment and care for future patients, their carers and families.

Without a clear purpose to working together we are likely to waste the chance to make a difference.

The focus needs to be a dialogue where we can all be informed by the insights and knowledge that we each bring from our differing perspectives. This can no longer be a one-way process where patients, carers and members of the public are invited in to help inform research. We have squandered opportunities to change things whilst promoting public presence on committees.

Too often we have brought patients, carers and the public into the discussion after the event – to learn in hindsight. There is value in this and lessons to be learnt. Sometimes we involve the people to gain insight – e.g from patient experience. But wouldn’t it be better if by working together we could consider foresight – e.g. “Let’s ask patients what research they want, whether this trial is practical, etc.”

If we want to get to foresight then we must become more specific about...

What it is we want to improve?
·      Is it policy and direction, the organisational structures and/or aspects of the research process and individual projects?
(These require different approaches and we have to be clearer about each context, and purpose, impact and benefit we seek to achieve)

How the public voice can be heard?
·      How should to inform, form and influence research and where should it be listened to for best effect?
(These approaches need separate planning and we need to be clearer about our role and responsibilities)

What is required to enable those voices?
·      What learning and development opportunities are needed/wanted?
(These must state a common understanding of learning and move away from training people to be like researchers)

In each and all of these we must ask how we implement equality legislation and address health inequalities.

Of course, I want to shout the phrase 'no decision about me without me' and yet I also want resources spent on treatments and not on unnecessary consultation or inappropriate involvement.

Although I support the demographic entitlement of involvement we have to spend money and time more wisely. It has to be about what can be gained and achieved by involving different individuals, groups and communities in developing healthcare research to improve service delivery. This should make us question paying people to attend meetings unless there are clear outcomes.

Most people want to know that their voice is heard; that their experiences are used to effect change; that feedback is provided about what happened as a result. The degree of their involvement may be quite small and make a huge difference whereas other may want to play a larger part and change things slowly over time.

I do not get the sense that mass numbers of the public want to be actively 'involved' by sitting on committees. I would go further and say that committee representation attracts too many people like me who like to understand organisational structures and processes, are able to express their views with some clarity yet are mainly white, middle class and retired from a professional background.

There is nothing fundamentally wrong with these characteristics. Well, I would say that wouldn't I? We do have a part to play but a richer, more culturally diverse, robust dialogue is required about the value, aim and practicality.

Social media offers as much potential as real active local community action. It is not a question of either / or but with new regional structures there are opportunities to do both in a coherent and joined up manner.

We, who are involved, must be advocates for the many different effective forms of involvement and engagement. We need to invite those we interact with to get inside local communities, to use a variety of methods for involving people and to make better use of social media.  We have spent time learning about research and now it is time we helped the researchers learn about people. We should help ensure that the involvement is appropriate and proportionate.

Public lay members of research meetings must shift away from 'being the lay representative' to being an advocate for involving people in the whole process, advising on different types of engaging and involving as well as helping groups to make those connections.

We who are involved have to ask better questions of ourselves, our involvement, the groups on which we sit and the attitude, behaviour and actions of the NHS. It needs to become about leadership rather than representatives. It is a shift towards advocating for the patient voice and becoming activists for change.

This means we need to give greater consideration as to how we help others to use their voices, develop their skills and build their confidence rather than necessarily being the voice. In this way we might make the very best use of our time and efforts.


I shall stop here as I think the next part of this blog mini-series will be about learning and development. Thank you for all the very positive emails about the Obituary for PPI.





Wednesday 7 November 2012

I'm_patient


The INVOLVE Conference in Nottingham next week offers an opportunity to take the practice of working together to improve research through transformational change. 

I am supporting a poster about Building Research Partnerships, the work being led jointly by the National Institute for Health Research - Clinical Research Network and Macmillan Cancer Support. Great leadership from Karen Inns and Jack Nunn from the respective organisations.

I am also supporting, at a distance,  Lessons for the Future - Roger Steel and Zena Jones - Session 6.1 - in looking at the risks and benefits of a more business like approach to organising our work.

But I am also hosting a discussion session 6.7  From Acronyms to Actions. My recent Blog - An Obituary for PPI has prompted this discussion so I thought I ought to say again in a poem....



Involve to Influence

I was a patient
Cancer, throat, long time ago
Speaking roughly
What would I know?

I'm a patient
Threatening, conditions, life
Important values
That's what I know!

I'm Patient
Involved, engaged, advocating
Listening closely
To know what I know.

Impatient
Action, improvement, change
Transformation time
Speak what 'you' know







Friday 19 October 2012

An Obituary for PPI - A Challenge for Change


"Who killed PPI?" I ask.

"Was it I?" enquired the tetchy tweeter @ppisqueek.

"Is it time to say farewell to PPI? Has it had its day? Deceased, gone before? Have we come to Polly Parrot Internment or is it Pointless Pigeon Inhumation?

"A kindness", some say. 

"How dare you!" say others.



Well, that may just have got your attention and hopefully encourage you to read, consider and comment on the current state of affairs described in this article.


When I say PPI, I actually mean the sole use of those three damned letters. 

It is an acronym that prevents progress. The ever present and indiscriminate use of this shorthand means that we lose sight of the real purpose of being a movement for change and making actual differences to NHS research, treatment and care. 

"Oh, we are doing PPI, we have a PPI strategy, we have PPI representatives on our committees, we have a PPI reference group and PPI is on every meeting agenda." I am sure that you can add some more! In fact, please let me know more examples of this dreadful misuse of our time, maceration of purpose and maligning of effort.

The statements suggest that 'doing PPI' is sufficient. This allows a number of people to believe that the involvement of the public, carers and patients is somehow different and separate from improving healthcare. It creates a PPI machine producing more of the same PPI. A factory of futility.

The interpretation of 'doing PPI' is as frustrating to many health professionals as it is to members of the public (choose your own subset of service user, patient, etc, etc.) who want to Make a Difference.

I had cancer 17 years ago. It seriously affected my health, my work and my family. I wanted to help in any way to improve cancer services and began some 13 years ago by being a member of a local health forum.  I wanted to see improvements made in health treatment and care. I had no desire to 'do PPI'! 

I want improvement.

I have come to understand that high quality research has the greatest potential to result in people receiving the best care. It means that the care, advice on prevention, treatment is based on evidenced. 'Doing PPI' for the sake of PPI just doesn't do it for me.  

I want to see research that has the needs of patients at its heart. I want to know that researchers have actively sought the advice of patients and carers to consider relevance and practicality of the study. I want study participants to be told about the results. I would like the subsequent application of that research used effectively across the NHS.

The irresponsible misuse of 'doing PPI' makes it almost impossible to create and develop a climate of change. It has become an end-product rather than the process of focussing on improving research or delivering better services.

The danger of this, still too prevalent, product based approach is that the reporting on such 'activity' records the input rather than any output. Xx number of meetings, Yy people attended, Zz committee members - rather than the actual purpose, the impact and the benefit.

The threat is that the horizon is limited to people attending meetings or being a representative on committees. The challenge is to provide those people with a clearer definition of role. Simon Denegri is demonstrating on his Lay Review how people are making a difference and providing information and comment that is about the purpose of change. 

The greatest risk is that it wastes the time that could produce change.

I have contributed to the fight to achieve 'presence' at meetings, in committees and on boards. The purpose was never just to be present - it was to foster change in culture, climate and commitment to placing the patient at the heart of change.

Policies, strategies, plans and toolkits about involving the public, carers and patients abound in profusion on shelves, in filing cabinets and even in my loft but too many of these focus on the product of involvement. The guidance in almost all of these documents is about how to do PPI. It is more of the same 'doing PPI'. 

It is not and never should be about PPI. 

It is about change, development and improvement. It is as much about people as it is about reforming systems and structures. It is a continual process of learning rather than an end-product. As a learning process it needs to identify areas of need/concern, clarify the requirement for involvement and then properly assess whether there has been any  impact, benefit and change. It is too easy to have very good PPI where nothing changes.

My advice is quite simple - SPELL IT OUT! Let's get rid of the accursed letters and...

SPELL it Out! Spell the whole statement and start with "Involving..." or "By involving..." 
Do NOT use the letters on their own.

Spell IT Out! Focus on the IT. What is involvement of people doing, about to do or has done. "By involving patients in this we did Xxxxx", "by talking to people who care for patients with Xxxxxx we learned ...." "In a short survey carried out in a local supermarket, members of the public clearly stated that they had ..... "
Do NOT write we are doing PPI.

Spell it OUT - Call what you are doing 'Changing Services, Improving Care or A Focus for Development' with a separate strap line - citizens in research or by participation, involvement and engagement. 
Do NOT call it a PPI Strategy, Policy, Plan, etc

So, when you next see those letters, use a red pen. When you hear them ask "What is the purpose? Try not to touch them with a......BP (Barge Pole).

My particular interest is about the value of research as a means of improving healthcare. This interest has become a passion driven by those who like myself have been touched by a life threatening illness and also by the huge numbers of dedicated and committed research professionals who share the same purpose.

I believe that the time is right to begin a new dialogue about our health services, about working together in ways that gain from each other's knowledge, skills and experiences. This is partnership working and not involvement.

And if you are still not convinced than type PPI into an Internet search engine and you will get Payment Protection Insurance (PPI) or Polly Peck International (PPI). Need I say more?


The time seems right for an honest and robust discussion about whether placing two people on a committee is necessarily the most appropriate tactic. How do we best gain insight from experience? Has some involvement been too much about 'us' becoming 'them'? How do we create change?


I will soon be tweeting about Improving Research by 'Moving Beyond Presence' through the creation of dialogues, working together, shared decision making and co-production.





Thursday 18 October 2012

The knowledge of the public

Facilitating the Influencing Commissioning course - working for Hestia and with Kensington & Chelsea LINks

I asked participants to say what they might knowledge and experience they brought to the meeting:

citizens, co-production, LINks, communities, social enterprise, commissioning, community research, procurement, disability, ability of patients/service users, boroughs, committee work, patient participation groups, community trusts, Healthwatch, impact of services, mental health, stroke, diabetes, transport, quality.

I shall try to send some more tweets tomorrow... @ppisquuek 

Wednesday 17 October 2012

PIES not PPIs

I am tweeting this week about the death of PPI and will upload my article on Friday which might just get a few people talking.

Also been passing around a little leaflet about Baking PIEs - Participation, Involvement and Engagement! Now I am definitely not trying to replace PPI with PIE!

The PIE leaflet is a bit of fun, light relief yet with a serious message!

Also going to be tweeting about Commissioning this week!


Monday 15 October 2012

Research and your local NHS


We need to push the NHS to make sure that research opportunities are explained to patients.

Please cut and paste the following and check with your local Trust and new Clinical Commissioning Groups to make sure that they are complying with their duty and reporting activity.


All NHS Trusts have a duty, through the NHS Constitution, to promote opportunities for patients to take part in clinical research studies. 

The National Institute for Health Research provides support for the delivery clinical research trials in the NHS in England, and there are now new measures of how individual Trusts are delivering on that duty across the different therapy areas.

THE KEY REPORTING AREAS are

1. How many clinical research studies the Trust took part in last year 2011/12? And currently?
                                                                                                                                                    
2. How many patients it recruited as a Trust?

3. How much research is being done across a range of medical conditions?



Clinical Commissioning Groups (CCG) are committed to promoting patient recruitment to and participation in research according to section 4.2.2 of the authorisation process.

A statement we might expect to see from CCGs 

“We declare that our CCG understands and will comply with our statutory responsibilities regarding promoting research; and that we are committed to following the policy of ensuring that the NHS needs the treatment costs for patients who are taking part in research funded by Government and research charity partner organisations”



Friday 12 October 2012

Excellent website which provides a good analysis of the News Behind the Headlines

Tuesday 9 October 2012

Bad Chairing


With the recent publication of Ben Goldacre's excellent book "Bad Pharma" I thought I would look out a piece I wrote some time ago about 'Bad Chairing'.



Bad Chairing - The10 WORST ACTIONS and SAYINGS


For those people chairingmeetings who wish to make a complete and utter hash of engaging and involving the public or what you may view as "those poor, pathetic, indolent, sufferingsouls" I wish to offer this sound advice which I have witnessed andlearned over the years. This is the ‘how not to do it’ guide which a small minority still do...

I have divided these as the 10ACTIONS and SAYINGS of the World's Worst commandments for involving the publicin meetings.

ACTIONS

·      View patients and public as from another planet
·      Make no contact beforehand with the patient or member of the public
·      Don't introduce yourself
·      Avoid introducing anyone at the meeting
·      Don't make eye contact
·      Ignore any indications of the patient/public wanting to speak
·      Ensure all papers are in NHS speak
·      UAWAG - Use Acronyms Without A Glossary
·      Don't have Patient Issues as an Agenda Item
·      Make no reference to patients in the Minutes

SAYINGSand MANNERISMS

·      You're still alive??? (Thanks to Bec, a colleague)
·      I had an minor op once so I know what it is like being a patient
·      It is all very complicated and you won't understand
·      Ah, yes, well, but....
·      I would never have had that treatment
·      You are only a patient and only see one small side
·      Raise your eyebrows at all patient/public comments
·      Use 'them' and 'they' when talking about patients and public
·      Use hospital humour - 'off for frying' rather than radiotherapy
·      Smile but look with pity in your eyes


One might assume that somethingsimilar to these lists have been circulating for years and must have formedpart of a training course for a small minority of professionals. This couldtherefore explain the regularity with which these behaviours are exhibited.


However, THANK YOU to all of YOU who help us in a million ways!

Monday 8 October 2012

Tick Boxing

As a patient, I have been involved in many meetings (far too many for my own good, perhaps).

A lot have been good but a few have been more about tickina box. 

I attended the meeting Educating4Patient&Public Involvement the other day when someone used the words 'Tick Boxing'. It sounded like Kick Boxing

Are there rules...

I have begun some possible rules below...

1. Invite the person to a meeting and send them to the wrong room
2. Invite the person and don't tell them when or where the meeting will take place
3. Avoid sending the agenda or papers before the meeting
4. Don't tell the person anything about the purpose
5. Consult people after you made a decision to tell them what you have decided
6. Include Involvement on the Agenda as the final item and with any luck you won't reach it
7. Leave everything to the last minute and demand a quick response 
8. Don't have any principles other than self interest
9. Forget to offer to pay any out of pocket expenses
10. Never say thanks or acknowledge the contribution
11. Ignore all patient groups, communities and patient advocates
12. Make sure that you write up this in a highly positive light - especially your contribution!


Rather than call these the Bloomsbury Rules I suggest that we say that we are unwilling to be part of such Foolsready Rules.

Now, how might you feel in that boxing ring?


Wednesday 3 October 2012

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


Wednesday 26 September 2012

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.

Thursday 23 August 2012

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 20
th 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 20
th 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.