Patient Engagement: The Patient Perspective
In this episode of If Medicines Could Talk I talk with Richard Stephens, a leading UK patient advocate.
Richard Stephens, is a cancer patient advocate who has been involved in patient insight driven research for many years. In this series of If Medicines Could Talk Richard, talks about what drives patients to participate in research, how they can best support researchers and where the future lies for further collaboration between the Patient, Industry and Research.
There are separate episodes combined into one video, each one is time coded.
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Patient Engagement: The Patient Perspective
NH: Welcome everybody. And today I'm thrilled to be able to introduce Richard Stephens, a cancer patient advocate who I will be interviewing for this new episode series of If Medicines Could Talk. Richard. Welcome.
RS: Thank you. It's lovely to be here. Hello viewers.
NH: Richard, could you just explain a little bit, short segments, about your background?
RS: My background is that I've spent years as a teacher, as a journalist, and working in local governments in social housing. In 1992, a long time ago now, I was diagnosed after six months of investigations with lymphoma. I was treated and part of my treatment involved two clinical trials. The lymphoma eventually went away. Several years later, I developed a heart problem, which has links to the drugs I had on one of the clinical trials and is also partly hereditary too. And then some years after that, I developed other problems which may or may not be late effects of some of the treatments I've had for all sorts of things. Way before all the big problems started, I had become a patient advocate. That was about two years after my first diagnosis. And it was for similar reasons to doing the clinical trials. I just wanted to help, that's the most important thing. But also, I thought I had certain skills and abilities that would actually allow me to help.
Why patients get involved in research (01:57):
NH: What's the message you want to use our interview for?
RS: I have one simple message and that is that patient advocates or patient partners or whatever phrase one wants to use, patients who get involved in design research, want the research to benefit. So there are two strands to this. Firstly, the researchers, whether their lab is clinical researchers or whoever, they should bear in mind that the patients they're going to be working with actually do want to help them produce something that will be a benefit to other patients, maybe in a year or two, maybe in a decade or two, but that's our focus. The other side of that coin is that patient advocates need to keep what we're doing and that is to help a piece of research get delivered. If it's a clinical trial, we want to recruit to time and to target. We want the results disseminated to the clinical community who will put them into practice. If it's lab research, there are other ambitions. But sometimes we patient advocates, we’ve diverted into other things because there's so much occupying our attention. One of the things I admire about the researchers is their focus on their science, but that's why they also need to remember sometimes that there's a human being at the end of it.
Emotional Intelligence empowers patient engagement (03:40):
NH: There is a lot more focus now, amongst researchers on emotional intelligence being used throughout the research cycle. And I’d just like to ask what's your view on this?
RS: Oh, I think that view is absolutely right. And I think there's a danger as we go down the routes of genomic medicine, we become a package of genetic mutations or genetic risks. As we go down a stratified medicine, we simply become a collection of cells and digestible targets for particular drugs or other interventions. I did once tell a conference a couple of years ago, I want a t-shirt made which says simply, “I am more than my molecules”. And it's something we all need to remember. It's the same argument that we patient advocates are beginning to advance for things like quality of life, patient reported outcome measures. All of those instruments have been designed by academics, 10, 20, 30, even 40 years ago. And maybe they're no longer capturing what it is that patients really want. So, there are all sorts of conversations still to be had.
What does patient advocate skill base look like? (05:13):
RS: I think there's probably a difference to the skills that a good patient advocate needs in different countries and perhaps with different diseases too. We are extremely fortunate in the United Kingdom. We have a proud history and the tradition of patient involvement in which we have a National Health Service which has the charter giving us various rights. And the slogan nothing about use without us . We have the National Institute of Health Research, which is geared up to deliver research in the National Health Service. We have academics and charities not only funding research, but increasingly supporting patients to get involved in this delivery and dissemination. That is not the same across other nations and other patient advocates in other countries have to fight much harder than we do to even get into the room never mind get their voice heard around the table and the various other cliché descriptions that we all use. The one thing we need is already captured in patient advocate. We need patients because everything takes such a long time, especially with research. But we also need to advocate, and we need to remember we’re not just a lone voice, even if we are a lone voice. If we're speaking on behalf of other patients, we do need to make some effort to find out what it is they want, what their experiences are and why they're different to ours.
What does the patient advocate skill base look like? (06:55):
NH: You've raised a very important point about the cultural diversity of patients.
RS: I enjoy meeting colleagues from Europe and perhaps it is slightly ironic that I often do so at industry conferences, rather than European conferences. There are lots of European umbrella groups that exist to bring together patient groups. But those are umbrella groups talking to representatives of other groups rather than the individuals meeting face to face. And I get more out of the individual contacts. In the UK, we're far more likely to bump into each other because the NHS, the NIHR has this commitment to involve all sorts of patients. It is unfortunate that we no longer have an annual conference for people involved in patient involvement. Of course, there's always online, Facebook, et cetera. The one big thing that I've seen in my time as an advocate that's made a significant difference is the European Patient Academy, which I've always felt was a brilliant idea. Essentially its sources including funding from Pharma with the ambition of training 50 patient advocates here to work mostly in Europe, one or two in the UK, but mostly in Europe and often with industry. So there's a quid pro quo going on. But it's to get the drugs and the new interventions out to more people. And that's such a brilliant idea. Train people how to work with industry.
How do you see patient engagement changing? (08:52):
NH: Does patient engagement change in early stage research or how does it evolve as the drugs go through their R&D stage?
RS: Well, drugs going through the R&D stage is quite a specific example. If we take research more generally, any research including research. I see patient involvement as a conversation and it should be a conversation from the moment someone says, there's a question to be answered, all the way through to we've answered that one and changed clinical practice element, and then what's the next question. And that applies to all sorts of things in conversation. The challenge is that at some parts of that journey, you will need to have the conversation, but actually different voices. It's really difficult for a patient advocate to actually know enough basic science, to have an effective conversation about a piece of work with lab researchers. It's difficult simply because that's not our world. But the lab researchers are trying to produce a product which will eventually be rolled out in clinical trials and thus will be put in front of patients. That's the bit we're really good.
What are the research conversations needed? (10:35):
RS: I think some of the questions that patient advocates ask our laboratory researchers are probably highlighted by cancer. They're common I think in other diseases too. But what we would like to see, for example in drugs, is drugs that have the same or better effect on the illness, the disease or the condition, but actually do less damage to the rest of our lives. So whether or not you're suffering from Parkinson's disease, where you're probably taking one combination of drugs for decades, and what you want is to stop the accumulating build-up of side effects, or you're having something like immunotherapy, which has been shown to be really effective in some cancers, but has all sorts of devastating side effects, all late effects for some people and not necessarily for others. So we would ask lab researchers if you're producing something, as ever, please could you not just focus on the disease and what kills all the cells? Remember that there's a human being who's got to be able to cope with whatever the side effects are.
What are the research conversations needed in early stage research? (12:00):
RS: I have been involved with research as a patient advocate for just slightly over two decades now. And it's only in the past two, three years that I've begun to work with the lab researchers on their research, as opposed to simply talking to them about the principles of engaging patients. We've got to go more than just opening the lab for an open day every year, there's more to it than that. Some of the discussions we're beginning to have are really difficult. I'm part of one of Cancer Research UK’s grand challenge projects. These are projects where the charity has offered 25 million pounds for global teams of scientists to crack cancer, and in so doing perhaps actually start affecting other diseases. The project I'm involved with is actually chronic inflammation as one cause of some particular types of cancer. So what we're looking at is the inflammation, not the cancer. But actually, talking to the lab researchers there it's really, really difficult because they are looking at things under a microscope. And I'm still thinking that is only one small part of the problem. But there are conversations that we can now have with these lab researchers.
Examples of questions in early stage research (13:34):
RS: So, some of the conversations we need to start having are about genomic data, genomic medicine. If you are going to sequence the whole genome in my body, we can start having conversations about who knows what about what the incidental findings might be. We need start having conversations about if we find that someone has a predisposition or a risk, how do we start explaining predisposition and risk? Because it's probably going to affect a lot more people. And we have to start thinking about how an individual person like me might start judging the difference. We have lots of examples of actresses who have certain genetic predispositions to breast cancer, for example, who take fairly drastic action to prevent the cancer. They've made their judgment. They presumably see top doctors, really expensive people, have very long conversations. In a crowded, under-pressure healthcare system that might not actually be possible for the rest of us.
One of the other conversations that we're having increasingly with lab researchers is about the materials they use. Not the microscopes and the test tubes, but actually the human tissue, the blood, the other samples that they're using, all of that comes from us. And increasingly it is a really rich source of data, not just about this, but you can have all of your DNA unraveled. All of this data gets stored. It can be linked to healthcare records. You can actually go back in someone's history 20, 30 years and begin to think; “Hang on a minute. What were they exposed to 20, 30 years ago?”. Asbestos is an obvious one, but who knows what we might find when we start applying massive data sets and computer power that we've now got to these things. There are some real issues that throws up for patients. Who do we trust to store the data? Who do we trust to give access to the data? Should it be access coming in or does the data get sent somewhere? And how do we know who's looking at our data? All sorts of things and the attitudes to that vary hugely by nation, by culture, by disease, by the person you're sitting next to on the bus.
NH: Examples of questions in early stage research. (16:12):
What would you say is a simple, pragmatic step to move some of these questions forward?
RS: The first simple pragmatic step is that people should not be discussing these things without some patients in the room. No patient in that situation would ever claim representative. But there are the great and the good, even in the UK who are talking about our data and what we might want and they're not even listening to us. And I find that, as you can probably tell, really, really annoying.
NH: So, if I've got this right, it’s that basically discussions on data privacy, data sharing, really needs to start addressing the principle concerns of the source of the data, ie. the patient.
RS: Yes, but at the same time too, we all need to think how we explain that to patients. Because if you talk to us about data, we, we all think it's numbers and things you put into a computer. Whereas when we're asked to donate tissue, well, especially if you've had a biopsy to test something and there’s spare tissue, what are you going to say? You don't want it back, you know. So of course, use it for research, carry on. But it’s the implications of that.
Conversations for privacy conversations. (17:53)
RS: There are whole debates now about broad and enduring consent. And even that means different things to different people.
NH: You don't want it to boomerang back in 10 years’ time and hit you at the back of the head.
RS: I think we need to have calm, sensible conversations because certainly in the UK and in Australia too we've already had challenges about what happens with your GP data, if it is made available for research. Forget any arguments about whether or not anyone's paying for it, just if it's made available. And the reaction of the public in the UK and in Australia too is; “Whoa, we don't want that”! But actually, if we're hit by a truck, the first thing we want while we're unconscious is that somebody should have access to our medical records. How else are they going to help us?
Conversations for later stage research (18:59):
NH: How then does the conversation change for later stage research?
RS: The conversation for later stage research will revolve around two clearly distinct issues. The first is actually getting the trial or the research delivered. So it's, what can you do to recruit people bearing in mind that each individual must be able to make up their own mind, there must be genuine clinical equipoise, but at the same time, there is no harm reminding people that all good evidence based medicine comes from people having done clinical trials before. There is no harm in reminding anybody of that. And you want it to retain, so a patient helping to design will help with that. What would put us off coming back for follow up, et cetera. But the other thing is we do the research. We participate in research as patients, we join research studies that benefit other patients. And the bit that we patient advocates are still not quite as fully involved as we might be, even in the UK, is actually implementation science. We tend to talk about dissemination. But actually, disseminating the results of a trial isn't good enough. When are they going to change their clinical practice? When is NICE going to produce its guidelines? When is the world college of this, that, going to produce an issue, et cetera?
Why is patient engagement working well in cancer? (20:46):
RS: One of the good things we have done in the UK is to have a national network of trial delivery. So we can recruit patients all across the board for all sorts of trials. So there's now over 6,000 open trials in the UK, as I'm speaking to now, and last year, 800,000 patients decided to participate in them. Roughly 10% of those are cancer studies. From the progress we've made in cancer, and it was 20 years ago that the National Cancer Research Institute brought together all of the people who fund cancer research in the UK to actually stop competing and actually collaborating. So what we now know is that 23% of all cancer patients in the UK take part in a research study at some point during their cancer pathway. If you include screening studies, observational cohorts, and so on, it's just short of one in three cancer patients. It's an astonishing figure.
Why is patient engagement working well in cancer? (22:01):
RS: In the UK, we run a national cancer patient experience survey. It's actually run in the four home nations, but the English one is crystal clear. Patients who participate in research are more likely to report a higher level of satisfaction with their overall care. Even patients who have a conversation about participating in research, but don't participate, decide not to, even they are more likely to report a higher level of satisfaction in their care. So there is something about, I don't know, maybe it's being made to feel special. Maybe it's the fact that you get a little bit more care, half an hour’s extra conversation, more quality of life studies, whatever it may be. There is something about participating in research that patients like and it affects their satisfaction with all of their overall care.
Are all patient advocates the same? (23:10):
RS: The figure of 23% for cancer patients who participate in clinical trials is of course an average. And it varies hugely across the cancer. So you have 45% in blood cancers. We are really, really good at recruiting adults to blood cancer trials in the UK. It's massive percentage in children. Then it drops for teenagers. And of course, people who have particular forms of cancer, the rarer cancers, the recruitment figures vary all over the place. So you have patient advocates working in blood cancers who can be quite competent and involved in lots and lots of trials, research trials, whole strings of trials, breast cancer too. But others in the less served cancers like triple negative breast cancer or cancers that are chronic problems and then die for whatever reason, we don't know, people get really, really worked up. This is why you get all forms of different patient advocates in different situations, even in the UK.
NH (24:27): So you have a cancer patient advocates who can be then subdivided into the type of cancer in which they have a lot of experience. Is that what I'm hearing?
RS: Patient advocates can be divided and subdivided according to their disease, according to their own personal experience, but also according to their interests. So some of us really are on the dissemination implementation site. It doesn't matter what the research was. If there's a recommendation that clinical practice should change, let's get on and do it. The people that go to NICE and actually sit often with drug companies saying, “Actually we do need this drug. Don't tell us how much it costs. It works.” And we can go to people way at the other end, whose interest is in what else can we learn about genome?
Using sense testing to evaluate what is important to patients. (25:31):
RS: So we all actually have different interests, different skills and different backgrounds, which are nothing to do with the disease.
NH: So it's really important if you're developing, say for example, a patient advisory board, to ensure that you have the right mix of patient advocates and their interests represented if you want to get the best result.
RS: I think it's very important but the model I like quite a lot is becoming increasingly common in Europe, which is actually where you do work with just one or two patient advocates. And then you sense test it along with larger groups and if possible, and it often is possible in the UK, you actually get a charity involved or support group who actually have a fairly big online membership so that you can actually test ideas, information materials with them. Parkinson's UK have done a brilliant piece of work on a clinical trial that they helped. I can't remember the commercial company they worked with, but it's big and where they got their whole database of patients. They just asked them, what is it you want from the next research study? And then they took that to Pharma and said, this is actually what our patients are asking for. There is a piece of work with cancer patients in the UK, the NCRI is living with and beyond cancer projects. It defined their research priorities. They came up with 26 unanswered research questions. Some of them are a compendium of questions fairly obvious, what's the best way to treat, diagnose, recover from cancer, XYZ product. But others are quite specific and one of these is, what are the biological causes of the side effects and late effects of any given treatment?
Taking into account culture. (27:43):
RS: I do remember a few years ago, there was a blood cancer trial that was being run in both the UK and in France, and it was discovered halfway through that the data was being collected and recorded differently. And by then the trial was halfway through and it was decided to stop it. I was involved in the decision and I still think we made the right decision to stop, but at the same time an awful lot of people were recruited to that clinical trial who have now not been able to contribute to anything simply because nobody's sat down and thought that two nations might record and capture data differently, or two hospitals, whatever it was, differently. We’ve got better doing things like that. You learn from your mistakes.
I also remember a few years ago discovering that some European countries were far more likely to trial drugs at stronger doses than we were giving them in the UK, that other European nations have different attitudes to giving drugs to young adults that may cause sterilization. Again, the issue is what dose do you give to them? Are you curing the disease? Do you want to have less chance of curing the disease, but more chance of them having kids if they survive? All sorts of these discussions are being had where the culture of the nation matters such a lot and the way they deliver their health care, not just their research.