Patient and public involvement – a matter of life and death
10 May 2018
Blog by Dr Mila Petrova, Cambridge Palliative and End of Life Care Group, Primary Care Unit, University of Cambridge. First published on the Primary Care Unit website.
She was supposed to outlive you
What would you do if your 26-year old daughter dies of cancer, in a chaotic ED corridor on a Friday, the child who was supposed to outlive you, the child whom you fed, washed, dressed when she was a tiny baby, a toddler, a youngster and then again, years later, when the illness had taken over her body and will?
What would you do if you received no professional help throughout, if you blocked every thought of Death, every word of Death so as not to invite It, so as not to hasten It, but then, when It came, It hit you as if you could have never known, never predicted, never expected It, as if we live in a world where Death is optional, negotiable, rare and you’ve taken all the necessary precautions against It?
What would you do if years later your grandson commits suicide?
Want to die? Try to die?
Wake up, morning after morning, choosing whether to slip your feet into the slippers on the soft off-white carpet or fall in, fall down the Big Black Hole right next to them, the Big Black Hole of depression, the Big Black Hole of despair, of the desire to disappear which always feels, oh, so near, oh, so real?
Or would you raise a million and half pounds for a centre where patients and their carers can receive the support which you didn’t receive? Join committees, events, patient and public involvement in research groups? Move mountains so that people in your faraway, quiet, beautiful, sad area by the sea can always have the palliative and end of life care that they need?
We want to believe that we will have the power to do the latter. Most of us will not. I hope you and I are never tested. But this is the test which Roberta Lovick, keynote speaker at the recent Care towards the end of life: Research into Practice conference of the Cambridge Palliative and End of Life Care Research Group and a long-standing member of the PPI group supporting our team, has had to face, continues to face day after day.
She is the person who made the last of those choices. Though if you want a story of total redemption, total liberation, ‘now it is all good, the past has gone, the guilt has gone’, you will not get it.
What’s in a name
The details of Roberta’s story and journey are not mine to tell. You need to hear her in person. I can only tell you about patient and public involvement, or PPI. Though I somehow hate the phrase, even more after her talk. Feels like a phrase on a form – grant application, ethics approvals application, KPI (Key Performance Indicators) reporting tool. Roberta, Louise (her daughter), the Louise Hamilton Centre, and the people who work with our Palliative and End of Life Care Research Group to advise on our studies do not fit on forms.
PPI can transform studies
Roberta was one of the people on the user group for my study, Prepare to Share?, on data sharing in complex conditions and end of life care. Our patient information sheets still make me smile – humane, clear, relatable, different. The only thing is that they are not ‘our’. Ours, following a 100+ page guidance I had responsibly read, highlighted and applied, were impersonal, complex and boring. It was our user group advice which transformed them.
We had several participants tell us that they got in touch because of the stories in our information sheets. How many researchers would think of adding stories to information sheets if a user group does not suggest it? Not me. It is not in the guidance. Not in the exemplars.
It can fire you up
Patient and Public Involvement is supposed to improve studies and engage the public. It does that. But I am not sure it does it as successfully as it motivates you. Few things have made me believe in my job more than the support of our PPI group.
Add a pre-emptive PPI meeting in any month when you are about to hear of the outcome of a funding application. Send a catch-up email every time you have an article rejected or a conference presentation turn lack-lustre. Come to think of it, the acceptance of a paper doesn’t feel nearly as good as a simple email from a PPI group member, coming from a place of truthfulness, trust and connection.
PPI is becoming better and better supported
PPI is better and better supported. You probably know of INVOLVE, the national advisory group which supports public involvement in NHS, public health and social care research.I still do not have a Top 5 of PPI resources, but recently I’ve found those helpful:
- the GRIPP2 checklists for the reporting of patient and public involvement in research (Staniszewska et al, BMJ 2017);
- the PPI webpages of the Primary Care Unit;
- CLAHRC East of England guidance for providing feedback to members of your PPI group.
PPI has a shadowy side that is not spoken about sufficiently
With all my deep appreciation for PPI, I often worry about it.
PPI is still a new idea.
It means that the zealots are overly zealous.
The criticisms are repetitive. The potential for box-ticking. The power differentials which make it difficult for PPI members to speak up, especially in broader stakeholder groups. The insufficient training. The costs associated with it. Yet there is so much more to think through in patient and public involvement. It has dark sides we need to manage carefully.
PPI can become professionalised. It can begin to look like ethics committees. Most of their members retired, articulate, dynamic, collaborative, coping well with whatever struggle we are interested in. Of course we want those people too. But we also want the grumpy, the shy, the difficult, the awkward. The ones whose words are broken, whose words fall flat. The ones who are still struggling.
PPI can become both quasi-therapeutic and straightforwardly traumatic. At least in End of Life Care, the dynamics of user groups may share some of the dynamics of psychotherapy groups. This is not unproblematic. And at least in End of Life Care research, some of your PPI members die within the course of a study. This is not unproblematic either. For you or for the other group members. Nor is it something I have seen discussed in PPI guidance.
PPI has ‘opportunity costs’. Ramp up the PPI involvement to do a better study. Add it to the design stage, data collection stage, analysis stage, dissemination stage. Provide regular feedback. Share your PPI approach. Do an exemplar study in terms of your PPI.
I want to do exemplar studies. I want to do top-quality PPI. But I also want to do a better literature review, a more thorough analysis, a different analysis, another paper, a better website, meet the data sharing requirements, the impact requirements … Is expanding the PPI the thing that will allow me to do the best study I could possibly do?
I forgot to tell her how beautiful her hair looked
Last, but not least, PPI can become over-reported. I did speak to Roberta in one the breaks of the event. We spoke of many things. I forgot to tell her how beautiful her new haircut looked. I did not forget what we spoke about.
But I have no intention of telling you. It was a personal conversation, be it between a researcher and a PPI representative. I often feel, when I am asked to report on PPI in our quarterly reports to a funder, that I want to tell them the basics and the rest is none of their business.
You don’t create meaningful PPI involvement without meaningful relationships. And meaningful relationships have much to them that does not go on a form.
Hurt, leap, write
I almost crashed with my bike thinking of one super condensed, wise thing I can tell you of PPI, which can guide you through its mazes. I still haven’t found it. Perhaps there isn’t one. And there are plenty of ways PPI hurts and is a matter of life and death in Palliative and End of Life Care research. I’d better not add bike accidents to it.
But I will tell you something I often say about research and which seems to apply to PPI.
If the results of your study did not surprise you, if they did not, in some ways, make you think the opposite to what you were thinking, you did not do a good study. Doesn’t matter if you were right and found, more or less, what you were expecting. You didn’t make the leap you could have made from what you knew.
If you ‘do’ PPI well, it will be nothing like what I wrote.
But you will want to write about it.
Learn about the Cambridge Palliative and End of Life Care Group at the Primary Care Unit, University of Cambridge.
About Dr Mila Petrova
Image: Roberta Lovick, 1 May 2018 (credit: Lucy Lloyd)
Contact: Lucy Lloyd, Primary Care Unit Communications Manager