PPI. Learning it is.

yoda

What can Yoda teach us about public involvement in research?

Turns out, I have a favourite Yoda quote and it’s this:

“Always pass on what you have learned.”– Yoda

For me, learning through conversations with other people is what involvement is all about. If I was going to get all hippy on you, I’d say it’s what life’s about and fundamental to everything that people do…

Very specifically, I’d suggest that what researchers learn from involvement, from their conversations with patients, carers and the public, often leads to the impacts on research which are widely known – but far too often what the researcher learns isn’t passed on. It’s not captured or properly described. It can be easily dismissed as ‘anecdotal’.

For decades, PPI people have been on a quest for the holy grail – ‘a tool to measure impact’ – but nobody’s quite managed it. Why is that? I’d argue it’s because we’ve been looking at involvement all the wrong way. Maybe it’s time to change our thinking and listen to Yoda.

When involvement is understood as learning, then very different questions (and answers) emerge around how to do it, why do it, who to involve, what difference it makes, and how to report it.

This is the first of six blogs in which explore the implications of understanding involvement as learning. I am hoping to pass on what I’ve learned from the many conversations I’ve had with lots of brilliant people. A big thank-you to all of them for sharing their ideas, knowledge, expertise and experience. I always learn something new from each and every conversation, so I hope these posts will be the start of many more.

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How is involvement different to qualitative research?

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Let me count the ways…

Last week I gave a couple of talks about involvement to researchers in Denmark. In the Q&A session, one researcher commented, “There is nothing new here. It’s just qualitative research. We’ve been doing that for years”. I’ve had this comment before and never felt I had a good enough answer…

Now I can point people to the excellent paper that just came out on this topic from Canada, which describes the many practical differences between these two activities.

But I wonder if there is another distinction that could be added to the list… For me it comes down to whose knowledge is being improved. With qualitative research the aim is to contribute to general knowledge and awareness adding to a body of evidence. By way of contrast, involvement often improves the knowledge of a specific individual.

A good example of this comes from a published report of the impact of involvement on a funding bid [1]. The researchers in this example consulted a PPI group about a project on the social and financial implications of carpal tunnel syndrome. A patient in the group explained how she had lost her job taking blood samples, because she had lost her fine finger movement through carpel tunnel syndrome. This was a revelation to these researchers! They hadn’t considered people’s working lives in their proposal. So they changed it and ultimately the project got funded.

Such an insight could have come from qualitative research and could have already been published as data. There must be countless research publications that describe how health conditions generally impact on work. But the point in this example was that these particular researchers didn’t know that. It was a specific gap in their knowledge and understanding. Other researchers may not have had this gap, and would have come to the group with a different proposal.

One conclusion from this, is that involvement can’t be carried out in the same way as qualitative research, where one person in the team ‘does the PPI’, and then reports back with the ‘results’. Every researcher needs to work with patient and carers, because each one might have different gaps in their knowledge and awareness. This also means that different members of a research team might find that the impact of involvement is not the same…

[1] Carter et al. (2012) Mobilising the experiential knowledge of clinicians, patients and carers for applied health-care research. Contemporary Social Science, 8:3, 307-320.

What patients/ the public want to know…

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… is not always the same as what others think they need…

One of the first projects TwoCan worked on was to write an introduction to clinical trials for the public. So we consulted the public to find out what they wanted to know about trials. Top of their list was an explanation of what would happen to them if they took part in a trial. Bottom of their list was how trials work. When we looked at the leaflets on trials that already existed, every single one began with an explanation of phase I, phase II and phase III trials. It was a valuable lesson for me. Sometimes what experts think the public need to know, is not the same as what they actually want to know…

I recently worked on a project to update INVOLVE’s Public Information Pack – the popular PIP Pack, now available on their website. Drawing on this earlier experience, I began by consulting a wide range of patients, members of the public and PPI leads, about what they thought would be important to include in an introduction to involvement in research. Many of them were very experienced in involvement and could reflect on what would have been most helpful to have been told at the start. Some had only just begun to get involved, and could identify the questions they still wanted to ask. A huge thank you to all of them for their expertise and advice! And an even bigger thank you to the excellent Sam Goold from INVOLVE, my collaborator on this project.

Two topics were consistently identified as the most important things that patients/ the public wanted to know. The first was about how research is valuable to anyone who receives any form of healthcare, as research produces the evidence that informs their treatment. They said they hadn’t always understood the link between research and health services at the start. The second thing they thought people needed to understand was how the knowledge they have gained through their lived experience is valuable to researchers and helps to improve research – what it is that patients/ the public bring to the table?

Interestingly, they said they didn’t need to know how research works – not at the beginning anyway. They explained that they sometimes heard mixed messages on this. On the one hand, they were told ‘You don’t need to know anything about research to be involved – your knowledge based on your lived experience is enough’. Then, at the same time, they have been given a whole load of information about different types of research – e.g. qualitative versus quantitative research and how clinical trials work…

They said going through the technical information was hard work! It’s often dry and factual information that could be easier to take on board when you can relate it to real life. So for example, it would be easier to learn about how a phase III trial works when you’re involved in one, can understand its aim and follow the process over time.

So for this reason, the new PIP documents don’t go into all the technical details of research and start at the place where the patients/ members of the public begin their involvement experience. I hope this means these new docs provide an introduction that is useful and relevant to them – what they really want to know, not what we might assume they need.

 

 

 

Involvement – making it a means to an end…

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… not an end in itself.

Researchers now have to report on any involvement in their project when they apply for funding or for ethical approval. Questions on the application form ask them for details. But what do they need to tell the funders and ethics committees?

Some work I’ve done recently with Jim Elliott at the HRA (The Health Research Authority, which oversees the work of ethics committees) suggests there’s a mismatch between what the form asks researchers about their involvement, and what would actually help the committee members do their job (see journal article). The question on the form seems only to check ‘what was done’. Researchers then describe the approach they used, who they worked with and the tasks that were carried out. It’s as if involvement is an end in itself, and we only need to confirm that it’s happened.

However the things that matter to ethics committees are exactly those aspects of research where involvement is known to make a big impact – the research design, the ethical acceptability of the research to participants, fully informed consent and assessing the importance of the research question. If researchers were to report on what they learnt from involvement and how this changed their proposal, this information could usefully inform the committee’s ethical review. Involvement would thus support the review process, and become a means to this particular end. The HRA is taking work forward to make these links clearer and stronger for everyone involved.

In other research contexts, the outcomes of public involvement might usefully support a very different kind of end. We still need a better understanding of how involvement can add value to organisations making different kinds of decisions, rather than thinking it to be generally a good thing! When we ask questions about involvement, we might need to ask about learning and specific outcomes, as well as checking it’s happened and has been done well…

 

Realising there are people behind the data…

 

Another important impact of involvement?

I just read ‘How to survive a plague’, an incredible book about the AIDS activists in America – which I’d highly recommend. There was one story that really stood out for me…

After three years’ campaigning and enormous personal investment in developing their understanding of the science and the condition, the AIDS activists had finally won a seat at the table, and were working closely with a big pharmaceutical company running the first successful clinical trial. The new drug was really expensive and difficult to manufacture, so was only available to the small number of trial participants. One of the activists involved in the trial had a partner who was dying of AIDS. He also happened to be quite rich. So he hired a chemist to synthesise the new drug in a backroom laboratory. This chemist went to all the conferences and read all the scientific papers and managed to work out seven of the eight steps involved the drug’s manufacture – but he was stumped on the very last step in the process.

At around this time, the AIDS activist went to one of his regular meetings with the lead pharma researcher working on the trial. The researcher announced there was a problem. The company had worked out they had a spy and were worried about their competitors. The activist fessed up – it was him doing the spying! He just wanted to make enough of the drug to keep his partner alive, just until the treatment became more widely available. He burst into tears as he explained how his chemist was stuck.

What happened next was amazing. The pharma guy gave the activist all the information he needed, so his hired chemist could finish the job! In later interviews, the pharma researcher explained it was the first time he had really understood ‘there were people behind the data’ and the significance of his research for their lives.

This phrase ‘realising there are people behind the data’ is one I keep hearing from researchers when I talk to them about their experiences of involvement. This seems to be a profound and deeply-affecting impact of involvement. Thankfully it doesn’t always have to be as dramatic an experience as the story above. But based on some recent work at Parkinson’s UK, it does seem important that the researchers get to meet patients and carers in person.

This makes me think of examples of involvement where panels of patients and carers are sent research protocols and patient information sheets for comment, but don’t get to actually meet the researchers – it’s just an exchange of documents. While this can no doubt achieve a great deal, it seems to me to limit the impact of involvement to practical outputs – such as better recruitment. By way of contrast, when researchers meet patients and carers face-to-face (especially for the first time), it seems they connect with the real-life significance of their research, which can have a profound impact on their attitudes and values. Although harder to describe, these softer kinds of impacts are extremely important – they might be exactly what’s needed to bring about culture change and a shift in researchers’ thinking.

What then are the lessons for practice? To me it suggests that involvement is as much about the human interaction between researchers and patients/ carers as it is about the task in front of them. It’s about the people as much as the data. So how can we better support the kind of involvement that leads to this more profound and far-reaching change?

There’s no purpose to involvement…

 

… only principles and practice.

Last year I was asked to help a big research organisation to develop their payment policy for involvement. So I did what I usually do and asked other big research organisations to share their existing policies on involvement, to learn from what they do and avoid reinventing the wheel.

I looked at six existing policies. What was fascinating was they were all pretty much the same. You could insert any [name of organisation] in all the relevant places and it wouldn’t really have changed much. They all started with a statement of their commitment to the principles of involvement – the rights of people to be involved and how this would improve the relevance of their work. Then they all went on to describe excellent practice in terms of how their recruitment processes were fair and transparent, how they trained and supported the people they involve, and the policy details of whether and how they reimbursed expenses and paid for people’s time.

But these organisations were so different! I won’t name names – but some were funders of research, some were concerned with the ethics of research, some were charities providing services, some were charities focused on funding research and campaigning, and some were organisations using the results of research to make decisions about health policy. So these organisations make very different types of decisions. This means the precise way that patient or public involvement adds value to their work is likely to be different in every case.

The nature of any decision being made determines why you need to involve people, what you need them to do, as well as precisely who you need to involve1. It’s important to bring in people with the necessary perspective and/or experiential knowledge to usefully inform and influence the outcome.

So I think paying attention to the purpose of involvement, and being clear how this relates to the specific decisions being made, could help organisations to be clearer about what they need to do and why. This won’t be about doing what everyone else has done, but focusing on what’s different.

  1. Fredriksson & Tritter (2016) Disentangling patient and public involvement in healthcare decisions: Why the difference matters. Sociology of Health and Illness (in press).

Facilitation, facilitation…

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… facilitation’s what you need.

Earlier this year, I evaluated a pilot of PPI in research at Parkinson’s UK. The final report is out today.

Parkinson’s UK had been finding patients and carers to get involved in research and passing their names to researchers – but they wanted to make sure that any involvement that took place was good quality. So they decided to invest in providing support to researchers and Parkinson’s UK volunteers, to help them develop effective working partnerships – to facilitate the involvement.

Involvement in essence means bringing together two groups of people, who don’t speak the same language, who aren’t always clear about what they’re meant to be doing, who may have different expectations about outcomes, and are learning new ways of working – all at the same time. No easy task. Facilitation helps smooth this process.

So what does this facilitation need to look like? If you think about involvement as a conversation – then an essential first step is preparing people to have the conversation, helping them to understand what the conversation needs to be about. Parkinson’s UK staff did this by providing training to patients and carers, and advice to the researchers, before the two parties met. This meant the patients and carers were clear about their role and the researchers were clear what questions they wanted to ask. The staff also provided a translation service, translating science to plain English and back again.

During the subsequent meeting between patients, carers and the researchers, Parkinson’s UK staff helped to keep the conversation flowing. They kept everyone focused on the task, made sure everyone had the same understanding of the discussions and ensured all participants had their say. Because this first meeting worked so well for everyone and they all learnt so much from each other, the researchers, patients and carers were keen to continue working together (where opportunity allowed). It proved to be the start of beautiful working relationships!

The big lesson then is that facilitation is one of the key ingredients to ensuring high quality involvement. Parkinson’s UK staff did all this work with great skill – but they hadn’t really recognised this fact until after the evaluation. The role of the facilitator is all too easily overlooked. Perhaps it’s time to look at facilitation in more depth. What makes a good facilitator and what can they do that’s most helpful?