Webinar transcript: Carer & PPI Steering Group member Claire Tripp
Webinar transcript: Carer & PPI Steering Group member Claire Tripp – talk from our January 2022 webinar:
Claire: Don’t forget to unmute myself! Hi, so hello everyone. As Sonya said, I’m Claire Tripp and I’m going to talk to you a little bit about what we’ve been doing behind the scenes in designing the study, getting ready to launch and how people with ME have shaped the study and been included in how we’ve decided to do things.
So I’m on the DecodeME PPI steering group, which is Patient and Public Involvement and we are a group of people that represent different needs within the study. We have different experiences. We have different insights into what it’s like to have ME or to look after someone with ME and we make sure that the study, the design of the study, recognizes what challenges people with ME might have when participating in the study and then what we can do to overcome those. I look after my daughter who has had ME since she was 14, so I bring the carer’s voice. I bring an understanding of the additional responsibility that carers might undertake when they’re trying to help a person with ME participate in the study and my daughter’s now 20. So I also understand how difficult it is to balance my need to support her and her need for independence, for confidentiality, and how we need to make sure that the study basically meets her needs, as well. So I bring that insight and point of view.
So the PPI steering group has oversight and input into every delivery team in the study and we have three three teams. We have the Genetic Delivery Team which covers the science side of things and hopefully, when we start to get some data in, someone from the Genetic Delivery Team will be able to come and talk to you about what they’re doing and what that means.
We have the Marketing and Communications Group which is around the study messaging, making sure the tone is appropriate that everything is transparent and that it’s made available in bite-sized pieces for you so that you find it accessible and inclusive. The majority of people in this group have ME themselves and I think you can probably see the impact that this has had on how good the communication has been about the study and how your needs as a person with ME has been taken into account.
Then we have the Cohort Delivery Team and this is all around delivering the cohort, which is the participants to the study, and it’s providing the data that the researchers will work with. As a PPI Steering group member I sit directly on two of those groups – the Marketing and Communications Group and the Cohort Delivery Team – and my role within those two teams is to make sure that all the decisions are made with people within ME in mind and to make sure that the whole Steering Group is involved in that process. So the Cohort Delivery Team is where the main bulk of work to date has taken place over the past two years, although obviously communications and publicity work has started to ramp up a bit now. Our task on the cohort delivery team is to design and develop processes that will get 20,000 to 25,000 of you all the way from registration right up to donating your DNA samples and we’ve been working on every aspect of this and PPI has been involved every step of the way.
So I’m going to give you some examples of how we’ve done that and made sure that our study design has been designed to make sure that happens. So, for example, when you sign up, we’ll ask you to give us some information about yourself and complete a questionnaire so that we can determine if you meet the scientific criteria to take part in the [second part of the] study. Having PPI here has really mattered because we’ve made sure that every single question on that questionnaire has value we; don’t want you spending energy on giving answers that aren’t 100% necessary to the study. We’ve been through it with a fine tooth comb. We’ve made sure that the wording is clear, we know that many of you have brain fog or will find it exhausting trying to understand something if it’s not clear and we don’t want you to give up and not come back, so we need to make sure that it’s fit for purpose and it’s as simple as possible.
We’ve also developed the online portal in the Cohort Delivery Team, so this is what you’ll see when you register. We’ve been testing it behind the scenes, we’ve been trying to break it. What PPI has done is we’ve given considerations to how many questions you see on each page. We try to keep the balance between overwhelming you with all the questions at once, but also trying to minimize the number of clicks that you need to make to get through to the next set of questions. We made sure that your answers save automatically for you, so that when you have to take a break you can go away and come back to it later and you don’t need to re-input and restart the questionnaire.
Some of the other things we’ve been doing is we’ve been working with the suppliers making sure that they can deliver all the kits that meet the Royal Mail requirements for sending saliva through the post. Sending human specimens now obviously has been tightened up. Right down to choosing the color of the bags that you will send your spit kits back in so that they’re clearly identified at the lab as being part of DecodeME. We’ve, on PPI, we’ve made sure that the outer packaging of the kits doesn’t say anything about DecodeME to maintain your confidentiality. You might shout from the rooftops that you have ME or you might not want anyone to know. Confidentiality has been important and we understand that, so we’ve made sure that your postman doesn’t know that you’re participating in the study unless you want to tell them.
We’ve made sure that the boxes will fit through your letterbox so that you don’t get that dreaded red card and have to go down to the sorting office to pick your kit up. We’ve also made sure that you can send them back properly. That you’re not going to have any problems that you need to go to the post office. We’ve tested every single variety of post box. I’m pretty sure, hand on heart, i’m sure we have and who knew that there was so many different types of post boxes and different size slots? But your kits will go through. You do not need to go to the post office.
We’ve made sure that the kit instructions are clear. We don’t want your spit kit sitting on your table because you feel overwhelmed. PPI requested a video for those of you that find it easier than reading, and an audio file of all our documentation for those that find listening easier. Things that I think wouldn’t normally be thought about in a study design but PPI has made sure that this is prioritized because we understand we recognize those difficulties and we want to overcome them. This isn’t only important from an accessibility inclusivity point of view, of course, we want you all to take part. We don’t want anyone to feel excluded. We don’t want anyone to feel like they can’t can’t take part but we need, from a science point of view, a good sample [size] across the whole range of severities of M.E. in order to make this study a success. This is crucial for us in the study design to make sure that everybody that wants to take part can take part and it was during one of the meetings about the online portal that PPI raised the question around accessibility for those of you who don’t have access to a computer.
We know that computers and online access has been really important for many of our community in socialization, connecting with other people but there are lots of people out there that don’t have that access and there are people who don’t want to be supported by a carer. We know that confidentiality and independence is important. It’s all well and good if you have a close family member looking after you like my daughter does, but what if it’s an external carer that you don’t want to share your private medical information with? So we set up a process with the 25% (ME) Group, where those of you who cannot participate independently can be supported by someone who understands. This was very important to us on PPI that this service was made available to people who need it and we also set up a process where you can participate by paper, if for any reason you can’t get on a computer or you don’t want to do it that way.
So we’ve also been working with other delivery teams on the Cohort Delivery Team so we’ve been working with the Marketing and Communications Group and I’ve had both hats on to decide how often and when we will remind you that we are waiting for you to return your sample. We don’t just want to follow the standard timelines in other studies. We want to make sure that the tone and the wording is appropriate and that it recognizes that for many of you, despite all our efforts in the study team, participating is still going to be challenging for some of you and we want to try and get that balance right. So PPI has been making sure that your needs
have been anticipated and it’s as simple as can be and we want to make sure that you know and feel that people with ME have been kept at the heart of the study because it’s really important to us that everybody that is participating knows and feels that. So when we launch we’ll be monitoring and tweaking the processes as we go, if needed, making sure that everything is working as it should be. 20 to 25 000 people is a lot of people to get through this study and we don’t want any hiccups. We don’t want to ask you to do more than you have to do. Every one of you is important to the study and we all know how important this study is to you and it is to everyone who is part of it. It’s our study and we need to make sure you are all included and this is how PPI have been doing it. We need to make sure that you feel you can sign up and get all the way to the end and I hope, I really hope, we’ve been able to do that. So I haven’t wanted to overwhelm you with the amount of work that we’ve been doing behind the scenes but I hope that that’s sort of touched a little bit on it and it’s been interesting. But I’m sure you can all appreciate how hard we’ve been working and how important this is to all of us. And I just want to finish and I’ve written this bit because I want to get this bit right. I want to finish by saying that the support across the whole study for input and involvement that PPI has had has been excellent and I hope everybody has been reassured by that. It’s testament to how much everyone involved cares about this study and the tremendous respect that they have for you people with ME. It’s been really touching to see a really truly-shared desire to get this right at all levels and it has been our study and I’m really proud to be part of it and, along with all of you, I cannot wait till the green light comes on and we can go.
I hope that’s been interesting and if anyone has any questions about what we’ve been doing what PPI has been doing about study design or anything then please put them in the chat and then I’ll try and answer them later.
Don’t forget to unmute myself! Hi, so hello everyone. As Sonya said, I’m Claire Tripp and I’m going to talk to you a little bit about what we’ve been doing behind the scenes in designing the study, getting ready to launch and how people with ME have shaped the study and been included in how we’ve decided to do things.
So I’m on the DecodeME PPI steering group, which is Patient and Public Involvement and we are a group of people that represent different needs within the study. We have different experiences. We have different insights into what it’s like to have ME or to look after someone with ME and we make sure that the study, the design of the study, recognizes what challenges people with ME might have when participating in the study and then what we can do to overcome those. I look after my daughter who has had ME since she was 14, so I bring the carer’s voice. I bring an understanding of the additional responsibility that carers might undertake when they’re trying to help a person with ME participate in the study and my daughter’s now 20. So I also understand how difficult it is to balance my need to support her and her need for independence, for confidentiality, and how we need to make sure that the study basically meets her needs, as well. So I bring that insight and point of view.
So the PPI steering group has oversight and input into every delivery team in the study and we have three three teams. We have the Genetic Delivery Team which covers the science side of things and hopefully, when we start to get some data in, someone from the Genetic Delivery Team will be able to come and talk to you about what they’re doing and what that means.
We have the Marketing and Communications Group which is around the study messaging, making sure the tone is appropriate that everything is transparent and that it’s made available in bite-sized pieces for you so that you find it accessible and inclusive. The majority of people in this group have ME themselves and I think you can probably see the impact that this has had on how good the communication has been about the study and how your needs as a person with ME has been taken into account.
Then we have the Cohort Delivery Team and this is all around delivering the cohort, which is the participants to the study, and it’s providing the data that the researchers will work with. As a PPI Steering group member I sit directly on two of those groups – the Marketing and Communications Group and the Cohort Delivery Team – and my role within those two teams is to make sure that all the decisions are made with people within ME in mind and to make sure that the whole Steering Group is involved in that process. So the Cohort Delivery Team is where the main bulk of work to date has taken place over the past two years, although obviously communications and publicity work has started to ramp up a bit now. Our task on the cohort delivery team is to design and develop processes that will get 20,000 to 25,000 of you all the way from registration right up to donating your DNA samples and we’ve been working on every aspect of this and PPI has been involved every step of the way.
So I’m going to give you some examples of how we’ve done that and made sure that our study design has been designed to make sure that happens. So, for example, when you sign up, we’ll ask you to give us some information about yourself and complete a questionnaire so that we can determine if you meet the scientific criteria to take part in the [second part of the] study. Having PPI here has really mattered because we’ve made sure that every single question on that questionnaire has value we; don’t want you spending energy on giving answers that aren’t 100% necessary to the study. We’ve been through it with a fine tooth comb. We’ve made sure that the wording is clear, we know that many of you have brain fog or will find it exhausting trying to understand something if it’s not clear and we don’t want you to give up and not come back, so we need to make sure that it’s fit for purpose and it’s as simple as possible.
We’ve also developed the online portal in the Cohort Delivery Team, so this is what you’ll see when you register. We’ve been testing it behind the scenes, we’ve been trying to break it. What PPI has done is we’ve given considerations to how many questions you see on each page. We try to keep the balance between overwhelming you with all the questions at once, but also trying to minimize the number of clicks that you need to make to get through to the next set of questions. We made sure that your answers save automatically for you, so that when you have to take a break you can go away and come back to it later and you don’t need to re-input and restart the questionnaire.
Some of the other things we’ve been doing is we’ve been working with the suppliers making sure that they can deliver all the kits that meet the Royal Mail requirements for sending saliva through the post. Sending human specimens now obviously has been tightened up. Right down to choosing the color of the bags that you will send your spit kits back in so that they’re clearly identified at the lab as being part of DecodeME. We’ve, on PPI, we’ve made sure that the outer packaging of the kits doesn’t say anything about DecodeME to maintain your confidentiality. You might shout from the rooftops that you have ME or you might not want anyone to know. Confidentiality has been important and we understand that, so we’ve made sure that your postman doesn’t know that you’re participating in the study unless you want to tell them.
We’ve made sure that the boxes will fit through your letterbox so that you don’t get that dreaded red card and have to go down to the sorting office to pick your kit up. We’ve also made sure that you can send them back properly. That you’re not going to have any problems that you need to go to the post office. We’ve tested every single variety of post box. I’m pretty sure, hand on heart, i’m sure we have and who knew that there was so many different types of post boxes and different size slots? But your kits will go through. You do not need to go to the post office.
We’ve made sure that the kit instructions are clear. We don’t want your spit kit sitting on your table because you feel overwhelmed. PPI requested a video for those of you that find it easier than reading, and an audio file of all our documentation for those that find listening easier. Things that I think wouldn’t normally be thought about in a study design but PPI has made sure that this is prioritized because we understand we recognize those difficulties and we want to overcome them. This isn’t only important from an accessibility inclusivity point of view, of course, we want you all to take part. We don’t want anyone to feel excluded. We don’t want anyone to feel like they can’t can’t take part but we need, from a science point of view, a good sample [size] across the whole range of severities of M.E. in order to make this study a success. This is crucial for us in the study design to make sure that everybody that wants to take part can take part and it was during one of the meetings about the online portal that PPI raised the question around accessibility for those of you who don’t have access to a computer.
We know that computers and online access has been really important for many of our community in socialization, connecting with other people but there are lots of people out there that don’t have that access and there are people who don’t want to be supported by a carer. We know that confidentiality and independence is important. It’s all well and good if you have a close family member looking after you like my daughter does, but what if it’s an external carer that you don’t want to share your private medical information with? So we set up a process with the 25% (ME) Group, where those of you who cannot participate independently can be supported by someone who understands. This was very important to us on PPI that this service was made available to people who need it and we also set up a process where you can participate by paper, if for any reason you can’t get on a computer or you don’t want to do it that way.
So we’ve also been working with other delivery teams on the Cohort Delivery Team so we’ve been working with the Marketing and Communications Group and I’ve had both hats on to decide how often and when we will remind you that we are waiting for you to return your sample. We don’t just want to follow the standard timelines in other studies. We want to make sure that the tone and the wording is appropriate and that it recognizes that for many of you, despite all our efforts in the study team, participating is still going to be challenging for some of you and we want to try and get that balance right. So PPI has been making sure that your needs have been anticipated and it’s as simple as can be and we want to make sure that you know and feel that people with ME have been kept at the heart of the study because it’s really important to us that everybody that is participating knows and feels that. So when we launch we’ll be monitoring and tweaking the processes as we go, if needed, making sure that everything is working as it should be. 20 to 25 000 people is a lot of people to get through this study and we don’t want any hiccups. We don’t want to ask you to do more than you have to do. Every one of you is important to the study and we all know how important this study is to you and it is to everyone who is part of it. It’s our study and we need to make sure you are all included and this is how PPI have been doing it. We need to make sure that you feel you can sign up and get all the way to the end and I hope, I really hope, we’ve been able to do that. So I haven’t wanted to overwhelm you with the amount of work that we’ve been doing behind the scenes but I hope that that’s sort of touched a little bit on it and it’s been interesting. But I’m sure you can all appreciate how hard we’ve been working and how important this is to all of us. And I just want to finish and I’ve written this bit because I want to get this bit right. I want to finish by saying that the support across the whole study for input and involvement that PPI has had has been excellent and I hope everybody has been reassured by that. It’s testament to how much everyone involved cares about this study and the tremendous respect that they have for you people with ME. It’s been really touching to see a really truly-shared desire to get this right at all levels and it has been our study and I’m really proud to be part of it and, along with all of you, I cannot wait till the green light comes on and we can go.
I hope that’s been interesting and if anyone has any questions about what we’ve been doing what PPI has been doing about study design or anything then please put them in the chat and then I’ll try and answer them later.
Read the rest of the webinar transcript:
Launch update from Chris Ponting
Claire Tripp’s talk on Patient & Public Involvement
Anna Redshaw and Pippa Stacey’s short video talks
Your questions on the study answered