Amy

Amy

One of Amy’s children had surgery before they turned two years old. A year later, she joined the family advisory council at her paediatric hospital where she has been involved in trying to engage more with the community, but also with researchers. Being a visual minority herself, Amy thinks it is essential that more effort is put into including a variety of people in patient engagement initiatives. If these groups are not present as partners or participants, then they will also not be able to benefit from results that are now largely based on data with white European background. She feels it is important to give people the choice about how much to be involved, and to be very sensitive to the power imbalance between researchers and patients or caregivers. Amy thinks that there are challenges to be overcome, such as when patients are only engaged to ensure ‘good’ representation, or to ensure that funding requirements are respected. She hopes that in the future, the diversity and inclusion of patients engaged in research and improvement efforts will improve. 

Caregiver

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Maybe the researchers have to hold some kind of community event, where you're going to explain in plain language what’s in it for us. Because I have heard, you know, at these National Paediatric Conferences, the researchers are somehow relieved or happy that, once you get the families involved in the co-design, then you know for sure that it’s not just going to sit on a dusty shelf after the research is done, okay. That it’s not going to live in a vacuum somewhere, that people are using your research and they're going to benefit in a concrete, tangible way. So I mean, in this day and age, you shouldn’t view social media as an evil tool I think the best researchers that are out there, and I’ll use the example of Doctor Christine Chambers for Paediatric pain research. You know, she’s teamed together withErika Ehm of YummyMummy on social media. And so if you're approachable, then it doesn’t seem like they're in some literal ivory tower, that there’s someone that were featured on social media, and a lot of mums are on social media 24/7, that’s where they are. [Laughter] They're not wandering the halls of your research lab, you know.

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Maybe the researchers have to hold some kind of community event, where you're going to explain in plain language what’s in it for us. Because I have heard, you know, at these National Paediatric Conferences, the researchers are somehow relieved or happy that, once you get the families involved in the co-design, then you know for sure that it’s not just going to sit on a dusty shelf after the research is done, okay. That it’s not going to live in a vacuum somewhere, that people are using your research and they're going to benefit in a concrete, tangible way.

So I mean, in this day and age, you shouldn’t view social media as an evil tool. I think the best researchers that are out there, and I’ll use the example of Doctor Christine Chambers for paediatric pain research. You know, she’s teamed together with Erika Ehm of YummyMummy on social media.

And so if you're approachable, then it doesn’t seem like they're in some literal ivory tower, that there’s someone that were featured on social media, and a lot of mums are on social media 24/7, that’s where they are. [Laughter] They're not wandering the halls of your research lab, you know.

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We haven't figured that one out. I think this is a topic that is on everyone’s radar as far as patient engagement is concerned, how to make it equitable, you know, because if we only ever hear from people of a certain demographic, of a certain social class, you're not getting the complete picture and you're certainly not being the most efficient or effective, getting the most bang for your buck, right, because it’s only when you include the most marginalised people who are probably the heaviest users, or the most expensive users of your healthcare system, the ones that will actually challenge the status quo. Because maybe the people in the preferred demographic that is available Monday to Friday between ten and three, are not going to challenge the status quo, but in order to make something better, you have to have people around the table that have the lived experience to challenge the status quo. So I'm sure that’s on everyone’s radar in varying degrees, this whole question about equity, do the people around the table reflect the weight areas of your hospital or the service in question. And then it’s a matter of getting everyone – well, especially those that have the monetary resources, i.e. the staff and clinicians, to identify the barriers and to actively remove those barriers. And it’s a question of asking different questions and asking questions differently.

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But if we’re going to move forward – and again, you said that the topic of remuneration comes up – it’s also a question of equity. If everyone else around the table is drawing a salary except for me, I mean, do you value my time and my input, or not? If you do, then maybe you should pay me something, and maybe just give the choice – leave the choice up to the patient or the caregiver to decide whether or not they want to take that money.

Because some are more than happy to say, oh, this is my volunteer commitment, I'm giving this time back to the hospital, but there are other people that they're giving up paid employment time and not everyone can give up – if they're paid hourly, they can't give up the time away from their paid job to be at the table. So there has to be some different way to look at remuneration. And then also, it opens up a can of worms when you look at people with disabilities and they might be on some form of government social benefits that get clawed back the minute you start giving them a certain amount of money that exceeds a certain amount. And does that mean that you give them cash instead? So there’s all these logistic issues