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.