CAN-BIND Podcast

Episode 07: Inspiring Perspectives on Participating in Research & Data Sharing

Podcast Transcript

Dr. Wegdan Abdelmoemin: Hello and welcome! You’re listening to a special podcast that is part of a series themed, “Discovery Starts with You” all about the importance of data sharing in brain research. This campaign is sponsored by The Ontario Brain Institute or OBI, which funds 6 different integrated discovery programs that are focused on different areas of brain health. In this episode, we are highlighting 2 of those programs, CAN-BIND and ONDRI, and some of the important people associated with them.

Hi, I’m Wegdan Abdelmoemin, Knowledge Translation Coordinator at the Centre of Depression and Suicide Studies and I am part of CAN-BIND, the Canadian Biomarker Integration Network for Depression. CAN-BIND is a series of groundbreaking studies in depression aimed at shortening the path from diagnosis to getting the right treatment! I’ll be moderating this discussion with my colleagues, Ruth and Andrew. Let’s hear from them

Ruth Kruger: Hello, My name is Ruth Kruger and I work as a strategist in knowledge translation and communications with the Ontario Neurodegenerative Disease Research Initiative, or ONDRI. 
ONDRI brings together Ontario’s research scientists and clinicians to tackle the complexity of dementia by studying multiple diseases related to neurodegeneration. Specifically, these include Alzheimer’s disease, frontotemporal dementia, ALS, Parkinson’s disease, and cerebrovascular disease, which can manifest post-stroke.  

Andrew Kcomt: Hi everyone, I’m Andrew Kcomt is the Knowledge Translation & Research Manager at Hope and Me – the Mood Disorders Association of Ontario. As the co-chair of the CAN-BIND Community Advisory Committee (CAC),  I represent the community and lived experience perspective on the Ontario Brain Institute’s  Knowledge Translation, Outreach, and Communications team.  My interests include patient advocacy, team-building, diversity enhancement, and collaboration. So, let’s get started!

Dr. Wegdan Abdelmoemin: So again, our theme for today’s podcast is open science and data sharing from the participant and researchers’ perspectives. We have 3 amazing guests with us today. Shelly, who is ONDRI’s patient and community advisory committee. We also have Dr. Jennifer Phillips and Patricia Burhunduli who are scientists and researchers with CAN-BIND. Andrew, over to you.

Andrew Kcomt: Hi everyone. Thanks so much, Wegdan. So, Shelley, we’ve known each other for quite a long time now but could you please tell our audience more about yourself and your involvement with the Ontario Brain Institute.

Shelley: Sure. I just want to first say thank you so much for including me today. I’m really happy to be here. So who am I? I’m a retired mental health lawyer. And since 2014, I’ve been a voluntary member of community advisory committees for a few research programs starting with CAN-BIND and then the Arthur Sommer Rotenberg Depression and Suicide studies. And both of those research programs focus on depression and mental health. And I was a member of the CAN-BIND committee and I’m still a member of the Arthur Sommer Rotenberg Depression and Suicide studies committee as a person with lived experience. So I have bipolar disorder and I struggled in the past, particularly with depression. Then recently, I joined the patient and community advisory committee of ONDRI that focuses on neurodegenerative diseases including dementia. I joined ONDRI about a year ago shortly after my mother was diagnosed with dementia. 

Andrew Kcomt: Wow! Thanks so much, Shelley, for sharing that amazing background. You have definitely worked with us for so many years and shared all of your great expertise so we’re really grateful to you for joining us today. So next up, I’d like to welcome Jennifer and Patricia. So maybe we’ll first start with Jennifer. So if you could please tell us a little bit more about yourself and your involvement with the Ontario Brain Institute.

Dr. Jennifer Phillips: Sure. So I’m a scientist at the University of Ottawa Institute of Mental Health Research at the Royal. And my research focuses on depression and suicide prevention. And I’m involved with the Ontario Brain Institute through its platform for depression, CAN-BIND. I’m an investigator on a CAN-BIND clinical trial that’s funded by OBI where we’re comparing electroconvulsive therapy and ketamine for the treatment of depression. And participants who are undergoing treatment in this trial are, we’re collecting brain imaging data as well as blood samples and cognitive data and all of that is being uploaded and managed, and shared through OBI.

Andrew Kcomt: Wow! Thanks so much for that, Jennifer. It sounds like you’re doing some amazing work. So now, I thought I’d pass it on to Patricia and maybe you can tell us a bit more about yourself and your involvement.

Patricia Burhunduli: Hi everyone. Thank you so much for having me. So my name is Patricia Burhunduli. So I am a graduate student. Well, I’m an MD-Ph.D. student which is basically you do medical school and Ph.D. training in a combined program. And I am working on the project that Jennifer just described. I’m a Ph.D. student on the project. I’m working on a kind of a side component of the project looking at a different type of imaging called PET imaging that we’ll talk about later. 

Andrew Kcomt: Thank you so much and welcome.

Ruth Kruger: Yeah. Shelley, I’m interested. What motivated you to get involved with OBI and what has the experience done for you?

Shelley: Well, I worked in Cambodia for 10 years earlier in my life and I learned there that you can’t address poverty unless you involve people living in poverty in designing and prioritizing solutions. And it’s the same principle when it comes to health research. So in the health research context, giving patients and I’ll refer to people, people with lived experience, not patients and that’s as opposed to scientists who have scientific and technical experience. So in the health research context, giving people with lived experience a voice in the research and the research agenda, setting research priorities, and participating in how research is designed, all make research more relevant and concretely, more concretely applicable to their day-to-day quality of life. And the community advisory committees I’ve been involved with had given me that voice. So that’s what’s motivated me to get involved. So it’s this idea that nothing should be decided for me without me.

You also asked me what the experience has done for me and it’s an interesting question because until recently I didn’t really think of my experience as doing something for me. I was ill in the ’90s leading up to my diagnosis with bipolar disorder. And after being diagnosed, it took a while to then settle on the right medication for me. And I felt extremely lucky that medication gave me my life back, gave me the essence of myself back if I can put it that way. And maybe you can hear the emotion in my voice. So being associated with OBI and CAN-BIND and the Arthur Sommer Rotenberg studies has been my way of giving back.

But now that I think about your question and it’s a good one, Ruth, I realized that the experience has done a lot for me. I think about the wonderful touching people I’ve met along the way who’ve struggled similarly to me. Many have become friends. And I also think about the passionate researchers I’ve met who had given me a lot of hope for the future. And you know, I’ve also learned a lot about research, the research process, a lot about translating what is learned through research to others. And I’ve gained a lot more knowledge about depression and surrounding issues.

Then ONDRI is a little different. I joined ONDRI’s patient and community advisory committee as I said shortly after my mother’s dementia diagnosis. And through my association with ONDRI, I’ve learned a lot about dementia and cutting-edge research in the field. And my initial feeling of helplessness after hearing my mother’s diagnosis has receded somewhat because I have this productive channel to contribute to change. And while I’m sad for sure to think that today’s research may be too late for my mother, I feel very hopeful that I’m part of changing lives down the road. In fact, I suppose there is one word I could use to answer the question about what the experience has done for me and the word is hope. I get hope.

Ruth Kruger: Wow! Excellent. Thank you, Shelley. Whew! My eyes are tearing a little. So, Patricia, I’d like to ask you. What have participants who you have worked with told you about why they volunteer in research?

Patricia Burhunduli: Yeah. So I’m actually going to echo what Shelley had said. So I’ve seen quite a few participants since I started back in 2017 and I can really put down the common themes about what I hear from people. So we have some people that come to participate who are patients, so people that are diagnosed with depression or bipolar, for example. And then we have people that are controls. So controls are people that are not diagnosed. So if I’m looking at someone with depression, I want a control and that would be someone who’s not diagnosed with depression. So when I look at my controls, overall like what I’ve seen with a lot of people, it’s that idea of giving back and helping when they feel a little bit powerless. So oftentimes, they’ll know a friend or a family member or a coworker or they worked in mental health or they worked in a hospital, in some capacity they’ve seen what mental health looks like. All of us have seen what mental health looks like. If we’re not battling something personally, we’ve met somebody. And the common theme that I hear often is being like, I can’t do anything for them but if this is something that I can do I’m totally willing to do it. So it’s really taking one or two hours out of their day and it’s really people just giving back in the only way that they know how. So that’s like one common theme that I’ve definitely heard many times.

And sometimes, patients will have — Like let’s say for some reason we have to send them home and reschedule their scan. Like they’re totally willing to come back, to travel back just to get their scan done. So it’s really that idea of helping and giving, giving back. And it’s really valuable.

What I really like to see is that it’s really, each and every person that comes and volunteers into our studies like they, their participation is like imperative for us to be able to kind of answer these questions. It’s kind of like voting when sometimes you can vote and you feel like my vote doesn’t — It’s just one vote. What difference can this really make? But it’s huge. It’s really big. And it’s the same thing with research. Like your volunteering and your participation. Medicine is driven by people volunteering their time that help answer questions. So those are basically the common themes that I’ve been hearing from all the participants that I’ve met over the years.

Ruth Kruger: That’s great. Thank you very much.

Andrew Kcomt: Next, I’m going to pass it on to Shelley. Could you tell us a little bit more about some of your motivations around participating in Ontario Brain’s research both as an individual or caregiver of a loved one?

Shelley: Sure. When my mother was diagnosed with dementia and I was told that there were limited things I could do to help her, it was really difficult for me. You know, as a lawyer, I’m used to fixing things and solving problems but I can’t fix or solve my mother’s dementia. I felt really helpless and that things were out of my control. So I jumped at the chance to become a research participant in ONDRI’s study on aging and neurodegeneration that’s now being launched. It’s called the HANDDS Ontario Study. And for me, participating in the ONDRI study, it afforded me the possibility of using my family’s situation for something positive, something positive, and forward-looking.

And it may sound like a small thing but it hasn’t been a small thing at all. Participating in something constructive has felt really empowering for me. And I’m part of the healthy control group of the study. For someone who has the illness being studied, I think participating in research can feel really empowering too. Especially when the illness is serious, participating can be a very welcome reminder that you do still have control over your life and that you have important contributions that you can make.

Then there’s another factor. At least for CAN-BIND and ONDRI, I can’t speak for other research programs but scientists in CAN- BIND and ONDRI don’t treat research participants only like a, you know, a faceless number or just like a data donor. CAN- BIND and ONDRI hold annual family and, friends and family day events that are open to research participants to attend if they want where they can learn about progress in the research, where they can connect with other people in their same situation and where they have the chance to talk to experts. So participants are part of the research program community.

Then the ONDRI study that I’m participating in takes this relationship between researcher and research participant even further in a way that I believe is very motivating for participants. So the study as I said is called HANDDS Ontario which stands for Health in Aging, Neurodegenerative Diseases, and Dementias in Ontario. And really, I don’t think I can overstate my excitement about HANDDS Ontario. As I think about it, HANDDS Ontario is at the intersection of research and care. And the wonderful principal investigator for HANDDS Ontario, Dr. Rick Swartz, expresses it as HANDDS Ontario being research embedded in care and equally care embedded in research. And however you express it, the point is that HANDDS Ontario serves both purposes.

So let me explain. The study involves participants wearing small, minimally invasive sensor devices as they go about their regular days and this is for seven to 10 days. And the devices measure a range of health and activity data. And it’s like wearing Fitbits that measure a whole lot more and over a longer period of time. And then participants also give blood samples and they complete some questionnaires. Except for going to a local lab to give a blood sample, the study takes place in the comfort of your own home which I think is really exceptional.

The study isn’t just about a one-way contribution of data by participants to scientists. And I want to take another moment if I can just talk about that facet of the study because I think it makes the study really innovative and appealing to participants.

So as part of the study, study participants are presented with personalized, super easy to understand health and activity reports that are based on the data that’s generated by the sensor devices they’ve worn. And the idea is that these reports can provide information to the participants that they can take away and I’ll give a concrete example; my mother has a dementia diagnosis as I’ve said. I wish she could participate in the study but she’s out of province and HANDDS Ontario is Ontario-based. But if she were to participate, there’s valuable, useful information that we could get. So my mother says she has problems sleeping but she’s not always the best historian. So one part of the report that participants receive focuses on sleep. And the sleep part of the report might show us that the later my mother goes to bed the better she is able to sleep through the night. So based on that information, we might adjust her bedtimes and we’d have the report to show her and to explain to her why we’re suggesting the adjustment.

And remember that while receiving all this personalized information the participant is anonymously contributing to advance science in this area. So this is what I mean when I say that HANDDS Ontario is innovating at the intersection of research and care. And it shows how far scientists can go to design research that is not only relevant but also involves a two-way sharing of information with immediate tangible benefits for participants. And I guess as you can tell by now I talk about HANDDS Ontario as much as I can and whenever I can because I’m hopeful that it will contribute to a shift in the way that researchers think about research design in the future.

Andrew Kcomt: Wow! That was an amazing overview of the amazing work that you’ve done, Shelley. We’re really grateful. You know, you’ve been in two of Ontario Brain’s programs. So being able to sort of share all of your expertise across and sharing that expertise, we’re particularly grateful for all of the support that you’ve given us. So thank you so much.

Dr. Wegdan Abdelmoemin: I’m really fascinated by the details that Shelley had just shared and she did mention near the end that there’s a process of two-way sharing. And this, you know, segues into my question for Jennifer. As a researcher, I want to learn more or we want to learn more about, what is your perspective about the Open Science model and data sharing?

Dr. Jennifer Phillips: Sure. So from my perspective as a researcher, Open Science really is sort of a movement to make scientific research more accessible and shareable through, among researchers but also and more importantly probably to the general public, people with lived experience as well as their family members. In my own work as a researcher, I think this kind of takes two forms. So we can think about sharing data as it’s being collected and this is something that is going on throughout OBI, the different platforms. So I’ve been working with CAN-BIND. And in our depression trial, for example, we’re collecting a lot of biological data, what we call biomarkers. We’re doing brain imaging, molecular. So we’re taking blood samples and looking at different molecular markers and cognitive data before, during and after patients receive treatment with electroconvulsive therapy or ketamine. And in our trial actually, there are lots of benefits so that if somebody doesn’t respond to whichever treatment they’re randomized to receive they can try the other therapies. So a couple of different benefits for them as they’re undergoing treatment.

But in terms of the data collection, we’re doing what we call standardized data collection. So we are collecting the exact same data from all of the participants. So if somebody is participating in the trial and they live in Toronto and they undergo a brain imaging scan, we’re collecting the same data from them as we would with a participant that is participating here with us in Ottawa. Both sites can upload their data to the same platform through OBI and this allows us to combine and compare the data across the sites. So let’s say we have a capacity to see 100 participants locally in Ottawa. If we collaborate and have different sites or hospitals participating, maybe we can now have four participating hospitals and then have 400 participants. So it really increases the amount of data that we have to work with for this sort of sharing of data as it’s collected, part of Open Science.

The other aspect is sharing data that’s already been collected. So in the field of biomarker research, we’re asking some really big questions. If we have somebody who’s experiencing depression, they go in for treatment, based on the clinical symptoms that they’re experiencing it’s very difficult to predict what treatment will be successful. There’s a lot of trial and error and this still takes a very long time to find appropriate treatments. So one of the goals of CAN-BIND is to use some of these biological data to look at it, look at the data across studies and across sites as a larger dataset, and try to find patterns in the data using events, mathematical models, things like that that we could then translate back to individual patients to try to individualize predicting what treatment would be best suited for them.

So data sharing really increases the impact of the research to potentially inform clinical practice, can impact care. And really Open Science kind of makes the individual contribution of each participant more meaningful because more people will have access to the data and more research questions can be answered using the same data.

Ruth Kruger: Thanks. That’s great, Jennifer. Actually, if I can ask a question that just occurred to me. I mean, could you describe how the data is collected so it can be shared with other research studies internationally, outside of the OBI network, for example? Are there certain practices that are followed?

Dr. Jennifer Phillips: Yeah, absolutely. So I work in brain imaging. So using that as an example, at each site before we start a trial, we are setting up our MRI scanners, our magnetic resonance imaging scanners, to ensure that we’re all collecting data that can be compared across sites. Once a participant undergoes a scan, we take the data and it has only the participant’s sort of code for that individual study. The confidential information is removed. And we’re able to upload that to something called Brain-CODE which is OBI’s sort of data management system. And people, other researchers can gain access to that by applying with their research question to a committee at OBI that can determine whether or not they can gain access to that data for their own research questions.

Open Science requires as well shared data elements. So for example, for something as simple as demographics, we want to make sure we have consistent definitions for sex and gender, for example. A lot of people want to conduct good analyses that take into consideration variables like sex and gender and those really need to be defined in the same way across all of the platforms in order for us to be able to use that data. And that’s a really good example of one of the benefits of Open Science because often some of these questions are not able to be answered unless you have large samples. So this enables the research to have more statistical power when we have similar definitions for our variables and that data is available from more participants so we can answer some of these important questions.

Ruth Kruger: Great. Thanks so much. So back to you, Shelley. What do you think about OBI’s Open Science model and sharing data amongst all the research programs?

Shelley: Well, I’m really happy to speak to this because to say that I’m a fan of the Open Science model is an understatement. As the end-user or consumer of research outcomes, I want to feel that there’s a brain trust of scientists working together, being transparent, learning from each other, collaborating. And the last thing I want to see is scientists, you know, hoarding information or unnecessarily duplicating work, wasting, you know, precious scarce resources. So for me, I have no doubt that the Open Science model expedites the advancement of science to the great benefit of us, the end-users.

The other important aspect to the Open Science model is for me, the way I define it is the inclusion of people with lived experience as partners. And being involved with CAN-BIND and ONDRI and the Arthur Sommer Rotenberg studies, I can say without hesitation that I’ve seen how people with lived experience have positively influenced the research agenda and priorities and helped to shape research, the research itself and that this has resulted in research that’s more relevant and often of more concrete benefit to the day-to-day lives of people living with a brain disorder.

I mean, I can talk about data sharing as well because I find this really interesting and exciting from the perspective of a person with lived experience. So I mean, it’s been explained. Like OBI funds research for a number of brain disorders including depression through CAN-BIND and neurodegenerative diseases through ONDRI and others. And in all the OBI-funded research, common information, common data is collected and that makes it possible to find connections and to make comparisons across brain disorders. And this is a big piece of what is so innovative and I think so wonderfully ambitious about OBI. So it promotes learning not only for each brain disorder separately but at the same time it promotes learning across brain disorders.

So I’m participating in a study about aging and neurodegeneration while at the same time I’m contributing to the possibilities of making breakthroughs that lead to a better understanding not only of aging and neurodegeneration but  also depression and autism and epilepsy and cerebral palsy and concussions and so on. So the potential of my participation in one OBI-funded research study is amplified because of OBI’s approach.

Ruth Kruger: Great. That’s great. I wouldn’t mind jumping in and just asking you, Jennifer, just being a researcher with presumably years of experience, I mean, how unusual is this Open Science model to OBI? And maybe if you could just comment vis-à-vis what Shelley was saying.

Dr. Jennifer Phillips: Yeah. I don’t know if — I’m hoping that it’s not going to remain unusual, that this is the approach we need to take moving forward. I think Shelley’s point about replication is really important that we don’t want to keep conducting the same studies at our own, in our own teams really small studies when we can join together and access data where there are more individuals that have participated. 

Part of what holds us back from making progress in terms of brain research is that each of these different conditions, there is so much variability among individuals so that if we keep conducting research studies within our own local community and in our own small research groups, we are dealing with just the participants from our site and the variability is such that we may miss things. So by combining everything together, we can gain much more insight about particular disorders and across disorders than we really can manage by ourselves. And I think that the research community at large is really realizing this more and more, that funding agencies are more open to funding projects that are using existing data. And I think that really this is the way forward rather than replicating what people maybe have already done.

Ruth Kruger: Excellent. Thanks so much. I’ve got a question for Patricia now. So Patricia, as a trainee, what inspired you to get involved in research? And how do you think your work translates for the community at large?

Patricia Burhunduli: At first when I decided to start doing research, it was just because I really am a curious person and I really wanted to understand the brain. Like I was fascinated by the brain in itself and the complexities of it and I really just wanted to kind of better understand and to learn more about it. So I’d gone into a project related to mental health, depression, and suicide. And the more exposure I got is where the passion really started to come through. I was just seeing that like depression is really like that’s what I worked with the most, is patients with depression and suicide, and it’s really more than meets the eye. Like it’s more than just having difficult times in life or being sad or — It’s way more than that. Like it’s so many different components from your brain to inflammatory markers which are like proteins in the blood to life experience. So many different dynamics. And that’s where my passion stemmed from. Like seeing how all these components can come together and how human beings are so individualistic and how a treatment works for one person with the diagnosis but doesn’t work with another person with the exact same diagnosis and kind of doing more research to try to better understand why. So that’s really where the passion really stemmed from, is really that this work is and has changed people’s lives and will continue to do so. And that’s why I really want to be kind of a piece of that, that story, a piece of that like contribution to society.

And then for the second aspect, like how do I think my research translates to the community at large, I want to go off what Shelley said. Shelley said the idea of hope and I really do think like on an individual basis like that’s a big piece of what we do even though that’s not how we word it in a scientific way but I’ve had patients, which is something that I’ve heard over and over again is that the idea of like they didn’t know that the brain has such as an impact on what they’re going through, that they think it’s just them and that people, like it might have just been their lives or they’re not being resilient. They do a lot of self-blame sometimes. So just giving that idea of hope and just understanding that this is more than, this is more than meets the eye. Like this is, it’s so multidimensional. So it’s kind of providing that aspect of hope to just be like we’re all working together. There are thousands of people around the world that are working on this one, like on this one issue. Like all these multiple issues, like each issue in itself, each disorder, there are thousands of people working on it to try to understand it. It’s more than meets the eye. So that’s one thing.

And another thing is also stigma. Like in the community, knowledge is power. So being able to kind of explain what we’re doing in the simplest of forms, like just that we are looking at the brain and trying to understand suicide with the brain or trying to understand depression in the brain or trying to understand how treatments work in the brain. Just being able to give that information at large, information is power and that’s the way that we decrease stigma. So even podcasts like these and platforms like these, being able to talk to people about what we do is going to decrease stigma to kind of encourage people, one, to participate in research and for people to not be ashamed to be able to, like there is nothing, there is nothing wrong. Everybody goes through something and we’re really just trying to solve these issues together. So I would say that’s how we’re really — At the community at this point in time, that’s what we’re doing. And we hope that one day, when you have a problem with your heart, we can do a blood test or we can do an ECG and we figure out what’s wrong. Hopefully one day, we’ll be able to do the same thing with mental health disorders through biomarkers which is a big part of what CAN-BIND and OBI want to do.

Shelley: Patricia, I just have to say I loved every single word that came out of your mouth. That was a fantastic answer.

Patricia Burhunduli: I meant it with my heart.

Shelley: Thank you. I can tell.

Patricia Burhunduli: You’re welcome.

Andrew Kcomt: I so very much agree. I have heard so much passion, expertise and the hope from this amazing group. So I’m so grateful. So I guess I’m going to pass this on to Shelley. To the people listening to this podcast, what will be some of your take-home messages to all of the public and community about the importance of participating in brain research?

Shelley: Yeah. I mean, for one thing, I would say that there is still so much to be learned in brain research. So your participation could contribute to breakthroughs that could impact on countless lives. So I would start by saying that. Second, I would say that scientists are increasingly valuing our voice, the voice of people with lived experience and this is resulting in research that is more relevant to our lives. And I encourage people to participate on community advisory committees and to take advantage of any other entry points to push, to influence the research agenda and research priorities, and influence how research is carried out so that research really reflects what is most important to you.

And then lastly, I would say from personal experience that it’s empowering to participate in research that can improve your life or the lives of people in your situation in the future. And you know, at a time when you’re probably feeling that you have little control over your life, making the decision to participate in research and the act of participating can be really positive and empowering. And you know, it’s an act of hope for the future.

Andrew Kcomt: Thanks so much for that, Shelley. You definitely like captured the importance of participating in research and empowering folks to actually make a difference. So thanks so much for that.

Dr. Wegdan Abdelmoemin: Yes, I agree. I think we’ve covered so much ground and a lot of passion and meaning behind contributing to research. Unfortunately, we’re nearing the end of our episode today. But before we go home, we also want to hear from Jennifer. What would be your take-home messages, Jennifer, for us?

Dr. Jennifer Phillips: I think the most important take-home message is that without participants there is no brain research. So there’s a lot of different kinds of research going on in Ontario. You can find something that personally interests you. We still have a long way to go to better understand the brain and we absolutely can’t get there without volunteers that are participating. Participation in research can provide care if you are a patient experiencing a brain disorder in the case of clinical trials. Research may offer access to new treatments. And I think just to reiterate what Shelley spoke of for people with depression, at least, we often hear that participating in research is something active they can do, something they can decide to do to contribute to better understanding of their own illness and their treatments which, yeah, is just really very empowering and can combat hopelessness. I think it can’t be understated how impactful it can be for people to consider participating in research.

Dr. Wegdan Abdelmoemin: Thank you for that wonderful wrap-up. It’s been wonderful having you all. Jennifer, Shelley, Patricia, thank you so much for joining us today.

Patricia Burhunduli: Thank you for having us.

Shelley: Thank you so much.

Dr. Jennifer Phillips: Thank you.

Dr. Wegdan Abdelmoemin: Excellent. Thank you as well for our wonderful hosts, Ruth and Andrew. We’ve enjoyed this thoroughly. And that’s about it for today’s podcast! We hope you enjoyed listening to it. This podcast is actually part of a series dedicated to open science and data sharing…our motto is discovery starts with you! If you are interested in learning more about this campaign, please visit

Thanks for joining us and until next time, goodbye!