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


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.


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.


·      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


·      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 -