Helen
Helen started doing PPI about eight years ago. She provides a lay perspective in health and medical research as well as in improving service delivery for patients.
Helen lives with her partner. She previously worked as an educational researcher, but recently began working as a Patient Experience Project Lead within the NHS. Ethnic background: White British.
More about me...
Helen started to become interested in health research after she and her partner were involved in a car accident. The hospital where she was treated had a section on its website about research and she emailed them to say she was interested in getting involved. Initially they sent her some things to read, but after that she didn’t hear from them again. Later, Helen was diagnosed with multiple sclerosis (MS) and decided to participate in clinical trials as a way of making sense of her condition and finding treatment. She also began to think about PPI again and realised how little encouragement there seemed to be to really engage people in research. She was also fascinated by how information about research is communicated to patients and wanted to ensure it was precise enough for people to be able to give informed consent. She contacted the hospital again to remind them she was interested in PPI and they put her in touch with a group that was conducting research about GP practices, which she joined as a lay member. She has been involved in numerous studies since then, reviewing information sheets and study protocols.
As she has been doing PPI for about eight years, Helen is starting to feel like she might be losing her lay perspective. She thinks this is because she doesn’t have to question clinicians and researchers because she is used to the language they use. She thinks that it is important to keep experienced patients involved in PPI and said there should be other roles for them to move onto when they have been involved for a while. However, she worries that researchers might choose to consult only experienced patients and so some important perspectives could be neglected.
Helen thinks PPI is a way of grounding research and opening it up to new ideas. She thinks it is important that researchers give feedback to people about the difference their input made. She enjoys doing PPI and said it scratched “an intellectual itch” for her. She is also pleased to know that her work might make things easier for patients. PPI takes up a lot of her time and her partner finds it difficult to understand why she does so much voluntary work. She would encourage others to do PPI because it’s a worthwhile thing to do and has decided not to apply for any more voluntary PPI positions in order to give others the opportunity to get involved.
Since Helen was interviewed, she found a new job working as a Patient Experience Project Lead within the NHS. She hopes to learn a lot more about how to get the patient’s voice heard by the NHS and acted on where possible.
Involvement work is interesting, but Helen also gets ‘secret contentment’ from knowing she may have made things better, even for one person.
Involvement work is interesting, but Helen also gets ‘secret contentment’ from knowing she may have made things better, even for one person.
Helen describes the process of checking leaflets are understandable and cover practical real-life issues which matter to patients.
Helen describes the process of checking leaflets are understandable and cover practical real-life issues which matter to patients.
But, I don't think that they understood what that would mean for me in terms of having to go to my GP, making an appointment with the nurse, walking in and the nurse seeing me and saying "Oh god not you again!" Trying to find a vein that they could get blood out of, sending it off, going into work late because I've been there for a blood test and then wrapping it up and doing it all again the next month. I mean, there's a big difference between a sentence in the patient information sheet that says “you must have a blood test with your GP every month” and the reality of, 'Oh my god, it's you again,' from the nurse. So, I mean that's a more, possibly more subjective thing because, you can't read through everything that they put into information sheet and say, "How do you think that's going to happen?" Or "Why don't you add something that - this is going to be really difficult, and we appreciate that. But, perhaps you could, if you don't mind, do this." There needs to be a certain formality in there just for people to realise the importance of it. But, I think it also needs to be something that is only given to a patient along with the conversation about how this is going to be interpreted in real life.
Working on your own can be isolating, so Helen really enjoyed meeting others involved in a range of projects at a training event.
Working on your own can be isolating, so Helen really enjoyed meeting others involved in a range of projects at a training event.
As she gets familiar with research Helen worries she starts to lose her ability to ‘be the person on the bus who doesn’t know anything.’
As she gets familiar with research Helen worries she starts to lose her ability to ‘be the person on the bus who doesn’t know anything.’
Helen doesn’t know if her involvement has made a difference. If people don’t get feedback on how they’ve contributed they may not feel motivated to continue.
Helen doesn’t know if her involvement has made a difference. If people don’t get feedback on how they’ve contributed they may not feel motivated to continue.
I wouldn't say that it annoys me massively but, I do recognise it from my own research that that is a very, very important part of the process that isn't happening. And I think, actually, that may well be one of the major parts of the process that keeps people participating’ essentially. Participating because you understand what's going on is great, and then being encouraged to participate is great, and then being supported in your participation is great. Enjoying the participation; fantastic. But, you need to understand what it is that you've done with your participation, you need to know. It's not patting somebody on the head but, it's saying "Thank you for what you've done, that was really useful, more of the same would be great, and this is what we have changed in light of all the comments we received." And even [if] it's just generalised, even if it's only something that's been sent round as 'We have received lots of comments, no names mentioned, these were the comments we received and this is what has changed.' I think that is hugely important, yeah.
Helen says a bit of appreciation and feedback on what difference they have made is helpful.
Helen says a bit of appreciation and feedback on what difference they have made is helpful.
Helen loves involvement so much it has become ‘a slight addiction’. But she would like more feedback on how she’s made a difference.
Helen loves involvement so much it has become ‘a slight addiction’. But she would like more feedback on how she’s made a difference.
It's like reading the first chapter of a really good book and you just, you have to read the next chapter and then, before you know it, you're half way through, and if somebody's ripped out the last page then that's the end of your life. And yeah, it does come to that kind of feeling. You just have - somebody tells you, "We've got this research project going on," and you know they don't even have to mention about whether they want people to be involved. But, just hearing about somebody else's research and people are always so passionate about their research, and you do get drawn in by that passion and excitement and you want to find out; you want to help; you want to know; you want to be in there with your hands dirty finding out, yeah.
That was a nice analogy about the last page being ripped out of the book because, that's sort of like when you're not given the publications or the feedback or the outcomes from it.
Yeah, yeah that's it; you never know what's happened at the end, yeah. Actually that – yeah, that is quite annoying and even, you know, I don't actually think I've ever had anything come back to me in terms of published output from anything that I have done.
Actually yeah, I must chase up a few of those and see if they would, but.
And do you think that's what you'll do, you'll contact them to say?
I think I will actually, having spoken to you now. I mean this has been very useful for me as well. I mean, I think it's pretty obvious that I'm chronically involved in PPI [laughs], I couldn't give it up if I was given treatment for it. And I think I - it's given me a lot to think about, it really has; and a lot of assumptions that I had made about my own involvement which I think it might be useful to challenge as well. Yes, I think I will go back to all of those people I've worked with and all of those people who have sent me things to read and say, "I did this for you five years ago, what happened?" Because, it would be nice to find out yeah. Thank you, yeah [laughs].
Helen loves involvement but worries she is losing her lay perspective. She would like to move on to a paid role.
Helen loves involvement but worries she is losing her lay perspective. She would like to move on to a paid role.
Helen describes sitting on a hospital board and the unequal power relations she sees. It’s hard to persuade the system to be more actively inclusive.
Helen describes sitting on a hospital board and the unequal power relations she sees. It’s hard to persuade the system to be more actively inclusive.
I'm not entirely - I mean, obviously it's not something that we will discuss and I choose ethnicity because it is reasonably apparent - the more ethnicity you are. But, I don't think that we necessarily have any people from different sexual orientations, I don't know. [I] don't know how, sort of, disabled status anybody is. Or, we have some people who have said that they have particular conditions but, there's been no concession in terms of handing out braille or hearing loop versions of meetings or minutes, or anything else like that. So there is an assumption that you are going to be white, middle class, probably middle aged to retirement age, independently wealthy, of a certain level of education, of a certain familiarity and comfortableness with seriously formal meetings where you say "Yes Chair, I would like to." And I mean, I sit there in the meetings - and I am not used to having to raise my hand and address the Chair to ask a question of somebody who has just also raised their hand and made a point. I mean it's not a comfortable atmosphere and I can imagine that if I was a, I don't know, a seventeen year old young black man from one of the estates on the edge of the town - where we all know that there are seriously awful people living. If I was on those coming into that environment I would feel seriously uncomfortable. And I have wanted to do something to change this but, have actually - there is so much inertia in the system that it is bigger than, it's a bigger job to make this more inclusive than one person can manage.
How you reach those communities? I don't know, I really don't know. I don't actually - I think one of the problems is that they don't even appear, certainly in the governing body; they don't even appear to be communities that they feel that they need to get in touch with. And I think that is one of the problems, is that initial desire to be in touch. If you have a desire to be in touch with as wider possible representative group of communities within - I mean, you want people to represent your community, and if you have that desire you will find a way. If that desire isn't there, then you're quite happy with whoever turns up.
We need to find people who are less likely to get involved, but it’s important to treat them equally and not like they’re ‘special cases’.
We need to find people who are less likely to get involved, but it’s important to treat them equally and not like they’re ‘special cases’.
There is less of a tick-box approach than there was, but Helen would still like to see more involvement in designing research.
There is less of a tick-box approach than there was, but Helen would still like to see more involvement in designing research.
Someone somewhere will benefit from what you do in your involvement.
Someone somewhere will benefit from what you do in your involvement.
Helen doesn’t know if her involvement has made a difference. If people don’t get feedback on how they’ve contributed they may not feel motivated to continue.
Helen doesn’t know if her involvement has made a difference. If people don’t get feedback on how they’ve contributed they may not feel motivated to continue.
I wouldn't say that it annoys me massively but, I do recognise it from my own research that that is a very, very important part of the process that isn't happening. And I think, actually, that may well be one of the major parts of the process that keeps people participating’ essentially. Participating because you understand what's going on is great, and then being encouraged to participate is great, and then being supported in your participation is great. Enjoying the participation; fantastic. But, you need to understand what it is that you've done with your participation, you need to know. It's not patting somebody on the head but, it's saying "Thank you for what you've done, that was really useful, more of the same would be great, and this is what we have changed in light of all the comments we received." And even [if] it's just generalised, even if it's only something that's been sent round as 'We have received lots of comments, no names mentioned, these were the comments we received and this is what has changed.' I think that is hugely important, yeah.