Good afternoon everyone. I hope you're doing well, and I hope that you can hear me. Welcome Michael Wilson. I guess what you could say is our new CLSA webinar series. We had some seminars ongoing a little while ago, and he had among hiatus, and now we're reprising these seminars as a webinar. So I will now introduce Michael Wilson. Before that, I'll introduce myself. My name is Mark Oremis, and I'm an Associate Professor in the Department of Clinical Epidemiology and Biostatistics here at McMaster University. I'm also an Associate Scientific Director of the Canadian Longitudinal Study on Aging, and I'm one of the coordinators of the seminar series. So Michael Wilson will be presenting today. Michael is an Assistant Professor in the same department as me, Clinical Epidemiology and Biostatistics here at McMaster. He is the Assistant Director of the McMaster Health Forum. He's an investigator in the program for policy decision making, and he's a member of the Center for Health Economics and Policy Analysis. His research is focused on supporting the use of research evidence by health system stakeholders, including community-based organizations and policymakers. He's interested in research related to the politics of health care systems and the social determinants of health for individuals living with illnesses, such as HIV and AIDS. Mike teaches in the Health Policy, PhD, in the Health Research Methodology and Bachelor of Health Science Programs here at McMaster. He has a PhD from McMaster's Health Research Methodology program and a diploma in Health Services and Policy Research from the Ontario Training Centre and Health Services and Policy Research. So without further ado, we'll go to Michael's presentation. Just a word for participants. We are taking questions, but if you wish to have a question, please type your question into the chat box. For various technical reasons, we are not going to enable everyone's audio and video systems. So again, type your questions into the chat box. And I'll turn it over now to Michael, who's going to be talking about efforts to support evidence-informed policy to promote optimal aging in Canada. Michael? Great. Thank you, Mark. And thanks for inviting me to come and give this presentation for your new webinar or relaunched or new webinar series. So hopefully the presentation is good enough to get people to come back for some later seminars as well. So as Mark said, I'm here to talk about evidence-informed policy to promote optimal aging in Canada. And just to give you a sense of what I planned to talk about, I'm hoping to use a lot of examples of some of the things that we're involved with at the McMaster Health Forum to support the use of research evidence by health system stakeholders, including policymakers, and to give you some examples within those initiatives about how we're focused on aging for some of our themes. So in terms of the overall presentation, I just want to give you a little bit of background first about, first, what does evidence-informed policy really mean? And then the general options available to support the use of research evidence. And then ways in which we've sought to address challenges relating to support the use of research evidence. So a few of the main examples I plan to go through are the newly launched McMaster Optimal Aging Portal, which was launched here at the McMaster Innovation Park last week, and Health Systems Evidence, which is one of the contributing platforms to that aging portal. And then I also want to go through one of our key initiatives at the Health Forum, which is evidence briefs and stakeholder dialogues, as well as one of our new programs, which is Citizen Panels, which generally means how do we engage their two efforts to engage citizens in talking about pressing health system issues. And then the also newly launched Rapid Response Program and the Health Systems Learning, which is a new training course that we're trying to engage people in, related to finding and using research evidence to support evidence-informed policy. So that's the general rundown. So I'll launch into the presentation. So first, just a little bit about what do we mean by evidence-informed policy. So in general, we like to take it to mean that it means to be about using the best available data and research evidence, both systematically and transparently, in the time available to policymakers in several steps. So the first is at the level of agenda setting. And here, so agenda setting, about what should policymakers or others be paying attention to at any given time in terms of the decisions that might need to be made. And we really focus here on efforts toward clarifying the problem iteratively, but also being attentive to what we call the streams of policy and politics. So being aware of the politics of the day and the types of solutions that might be available to address the problem. And so when we say clarifying the problem iteratively, it means using things like data and research evidence to really try and work through what are the core pieces that are contributing to a particular policy problem. So it's not enough just to say that there's a spike in an indicator and that's indicative of an emerging problem. It's more about drilling down to all the other related factors that might be contributing to that problem. Because we haven't clarified the problem and spent a lot of time doing that in detail, then it could be that the solutions and the policy solutions that you're crafting to address that problem might not actually be addressing the things that you need them to be. And you might spend a lot of time going down the wrong road and spending a lot of money on different solutions to address the problem if it's not done right at the beginning. And then research evidence can also help with the solutions or policy development. So here we often talk about framing options in a health system iteratively. So it's working with stakeholders to think through what types of packages of interventions or health system arrangements might be able to be used to address the pressing problem. And then once the policy has been taken up, what kinds of implementation strategies can we put in place? And how can the research evidence contribute to us identifying those and operationalizing them? So just as a note here, when I say best available research evidence, I typically mean the highest quality, most locally applicable synthesized research evidence. So and that means first looking for a perfect match to support what would call an instrumental use of the research evidence. So a clear link between a systematic review or a research study for instance and to a policy decision. So there's been a clear information transfer from the research to a decision made. And then if we don't have that type of really clear study that's right on the mark, we're look more broadly to support a conceptual use over time. So how might other studies that might have some perhaps more peripherally relevant information be helpful for informing the debates about a given policy issue over time? So in terms of the options available to support the use of research evidence at the level of policy, so we usually frame our efforts around two key findings that came out of the systematic review that was done a few years ago that looked at the factors that increased the prospects for research use in management and policy. So the first of those two is supporting interactions between researchers and decision makers. And what this means is really fostering partnerships and engaging decision makers in things like priority setting for new research, including things like systematic reviews and then also in deliberative debates about what can we do to really champion efforts to move forward. So there's a lot of literature about the having policy makers and decision makers engage from the start to the finish and all the subsequent follow up really makes for more relevant research and increases and makes it more likely that those policy makers are going to use it in the end. And the other factor was issues around timing and timeliness. So this is really about making sure that the available research evidence is there when policy makers need it. So some efforts around this are usually framed in the context of facilitating the retrieval of optimally packaged high-quality and high-relevant systematic reviews and evidence briefs. So what I'll get into later are things like one-stop shopping, which is the McMaster Optimal Aging Portal, which I mentioned a couple slides ago, and rapid response units, which tend to have a much quicker turnaround time to get stakeholders the research evidence they need about questions that are very, very time sensitive. So literally within weeks or a month or two. So this is just kind of a schematic for what I was talking about. So often we have processes like in the top left corner where the research process is happening in its own world. We've got our own timelines. It takes months or a year or years to produce a given study or a review. And then we have the decision-making processes around policy that are going to happen in their own timelines. It could be a day, it could be weeks, things pop up in the legislature, they have to address it right away. And those two processes won't meet without any purposefully linked systems to help them do so. There's some instances where the research process, so if Mark produces a study that happens to be directly on point with what the government needs to be or a decision-maker needs to be addressing at a given point in time, then that's great. But it's more of a fortuitously linked process where it wasn't purposefully linked. There weren't systems put in place to make sure that the research evidence that was available got into decision-making. So what we're trying to get at in efforts around supporting evidence-informed decision-making are these knowledge translation processes where we're putting in systems that are the go-between the research process and the decision-making process and to help people get the evidence they need in the timely manner and working in different timelines with that. And then also setting up processes for people to actually talk about and deliberate about different policy issues and solutions to them. So that's all great, and these general options sound fine, but setting up these knowledge translation processes and supporting the use of research evidence more generally faces a lot of challenges. And so we usually find that they group around these four with most of them being under the fourth one. So the first big challenge is that research evidence competes with a lot of different factors in the decision-making or policy-making process. So there's lots of things that policy makers have to consider, and research evidence is just one small factor within the range of things that someone working in the government has to pay attention to. And it's also not always valued as an information input into decision-making processes. So it's somewhat linked to the first one that there's many different things that they have to pay attention to. So why would, you know, a very difficult to read and peripherally relevant research study be at the top of their list of things that they should value as an input to their processes. And three, research isn't relevant. So perhaps perceived that it's not addressing the exact topic that they need to be addressing at a given time. And lastly, it's not easy to use. So this is probably the one that we've focused most of our efforts on and trying to do things to address challenges related to the fact that it's not always communicated very effectively. So we're trying to help them hear music instead of noise, for instance. It's not always available when they need it in a form that they can use. So it's about packaging the use of research evidence so that policy makers and different types of stakeholders find it more accessible and easy to use, lack mechanisms to prompt them to use it in decision-making. So I've got one example in a couple slides for how this has been done in Ontario. And lastly, decision-makers lack forms where challenges can be discussed with stakeholders and researchers. So I'll give examples of each of these in the next two slides. So for the first challenge, this is probably the hardest to address. So the fact that evidence competes with many other factors in the decision-making process. If you can put yourself in the shoes of a policy maker and the Ministry of Health and Long-Term Care, they're dealing with many different things, things at the highest possible level like institutional constraints. So the constitutional rules that they have to work within. They're also addressing interest group pressure, whether it be the Ontario Medical Association bouncing that against the Canadian Nurses Association physios, any different group that might have an interest in a particular policy debate. It could be other things like ideas around citizens' values, their tacit knowledge in the real world, views and experiences. So the government has to balance these types of values against what they're able to do within institutional constraints, what the interest groups want them to do, what citizens hold in terms of values, and then also research evidence. So research evidence is going to play that one of those many roles within this broader grouping. And then there's always things like external events like global recessions that we've come through in the most recent years. So one option that some people say we should do here is to improve democratic processes, but really this is just beyond the scope of most of us. I'm not really sure it's something that any of us could realistically tackle, but the other thing is to create routine processes to consider evidence and decision-making. So the best example here is NICE in the UK, where they've really solidified a process to have research evidence integrated within decisions about health technologies, but for other areas that largely isn't done as consistently. The second challenge about research evidence not being valued as an information input. So one idea here is to convince decision makers to place value on the research evidence by highlighting examples where it's really made the difference between success or failure and a particular policy. So one example could be something that we recently worked on at the health forum, which is about community-based specialty clinics, where we held the stakeholder dialogue that was informed by an evidence brief and literally the next week the information from that evidence brief and the findings from the stakeholder dialogue went up the cabinet and the decision was made to implement community-based specialty clinics. So it's kind of linking those processes where we really got people in the room to talk about the best available research evidence and when action happened relatively quickly. So for challenge three the research isn't necessarily relevant. Here we can be doing things like engaging decision makers periodically in priority setting processes and communicating the priorities to researchers. So some of these aren't necessarily aging specific, I have some more aging specific ones coming up, but you know they're certainly applicable to many different sectors and lessons can be drawn from all of these. And the best example in terms of priority setting in Canada is the listening for direction activities that were done. There were three separate instances of doing those listening for directions, where they did consultations across the country, met with policy makers, stakeholders, other groups with the stake in the health system, and talked to them about what their priorities were and then refined those into researchable questions and asked researchers to respond to those in funding calls. And they set them up in terms of responding in the long, in the short, medium, long term. So long term being for things like new data collection systems and new primary research, medium term for doing things like systematic reviews and short term for doing things like evidence briefs which package all those things together in a shorter period of time. So the idea is that these things are balanced. You need the data collection systems and the primary research, otherwise you're never going to be able to do new systematic reviews or update existing systematic reviews and eventually package them into things like evidence briefs that might be able to inform a policy maker. So for addressing challenge four, as I said, this is probably where we've had the most action at the McMaster Health Forum where we have focused most of our efforts. So we can be doing things like promoting the use of one-stop shops for synthesized research evidence. And it happens that McMaster is just the hub for this right now. We have the three best in class databases really in the world for supporting the best available clinical evidence. So that would be Brian Haines's group in the Health Information Research Unit who managed McMaster Plus. So it's the go-to source for many people around the world for the most relevant and high quality research evidence about clinical questions. And we have the best databases synthesized evidence about public health programs, which would be Maureen Dobbins and her group who run Health Evidence. And then with us, with Health Systems Evidence, which is the world's most comprehensive repository of systematic reviews about health system questions. So making decisions about policy leaders, for instance. And then other issues include the stakeholder dialogues, which I spoke about before, which are informed by pre-strictulated evidence briefs. So I'll come to that. The citizen panels, rapid response units, and training for policy makers. And then the one that I haven't, that I didn't quickly touch on before, is the research evidence tool at the Ministry of Health and Long-Term Care. So if you recall, one of the sub-challenges about research not being easy to use is that policy makers lack prompts for them to be able to use it. So this tool in the Ministry of Health and Long-Term Care, which was implemented a few years ago, I think as part of the Excellent Care for All Act, requires anything going up to the level of cabinet that they have to fill out this form to say where they look for research evidence to inform that policy submission. And then one of the two required sources for them to look at is health systems evidence. So anything that's about kind of a health system relevant question, they have to have looked at health systems evidence for the available since the size research evidence before it goes up to a level of cabinet. So that's one way to formally make people and prompt them to look at what's available. Then the other piece is packaging this into the La Barge Optimal Aging Initiative and through the Optimal Aging Knowledge Translation Enterprise. So I've got a couple slides on this just to give you a sense of what's included within that. But the main thing is the portal and also the stakeholder media engagement pieces as well. So in terms of the Optimal Aging Portal, we have the La Barge Optimal Aging Initiative, which is the result of a donation which was given by Suzanne La Barge. And the ways in which we're involved in this at the McMaster Health Forum is through the Knowledge Translation Enterprise, which consists of both the portal and then the stakeholder media engagement. So the portal is just bringing together the three platforms that I told you about and then made possible through the Mac Health Platform, which Anthony Levinson runs. And then the stakeholder media engagement are things like the dialogues that I was talking about before and then I'll come to in a few different slides. So it's that getting people in the room, talking to them, working through solutions creatively and collectively, and also engaging the media and things. So we have this new hitting the headline service where we're scanning headlines each day. And if there's anything relevant to Optimal Aging, pulling it out, doing a comparison of what the statements, doing the comparison of the statements made to the available research evidence and then sending out a tweet related to those. So in terms of the actual portal components, so there are several components. The first is the Evidence Raider. And that's largely this federated search between the different platforms. So we've always said that it makes a lot of sense to have all three of these at the clinical, public health, and systems level and then come together in an integrated way. And we've been able to do this through the Optimal Aging initiative through the donation and focusing on aging first. And so all the research evidence in each of those databases that's relevant to Optimal Aging is brought together within this federated search under the Evidence Raider. And then Brian Haynes' group does a lot of relevance ratings for the evidence they have. And then we're also hoping to engage citizens in rating the relevance of the available sources of evidence as well. But it needs to get up and running and get citizens engaged before we can get enough of that information going for it. And then we have a thing called the Web Product Raider. So citizens are constantly also looking at other sources of evidence, things like websites and other groups who give it a lot of information. So the idea is that we're going through a lot of these sites. And this is Maureen Dobbins' group doing this and rating them according to a set of criteria to give citizens a sense of what's a really good quality site with some credible, easy to read and transparent sources and what are some not so good sites. So you could have anything from Dr. Oz's site to another perhaps really credible site like the Canadian Cancer Society or something like that that gives out a lot of great information. And then we also have the Connector, which is about keeping citizens engaged and not just so being able to have people who perhaps are grappling with similar issues to be engaged through this Connector function. So right now we have things like blogs about different issues that people associated with the optimal aging portal have written and invite people to comment and share and share related to those topics. And then we also have a reminder service that people can sign up and if there's particular areas of interest they can get prompts about newly added information about those areas of interest. And then eventually we'll have this Navigator function as well, which will connect people with services in their area based on where they are. So that's the portal in a nutshell. I mean, so I encourage you to go and look at it if you're interested. It's the McMaster Optimal Aging www.mcmasteroptimalaging.org. So it's just a very quick and easy registration and you can just navigate through the page and start exploring what's available. So this is just a schematic of all the different groups that are contributing to it. So as I said, it consists of the three database platforms plus MAC Health, which is the online interface that brings it all together. So in terms of I wanted to highlight health systems evidence. So this is a talk about supporting evidence-informed policies. So health systems evidence is the one that we run and we've really targeted towards policy makers in particular because it's talking about system level questions. So how are we making decisions about delivery arrangements? So for instance, should we be delivering care in multidisciplinary teams? Can we substitute nurses for doctors in particular instances and still get the same level of quality of care and improve outcomes for people in coordination of care, for instance? So what we've done is we pull systematic reviews from many, many sources and we review them according to one, whether they're a systematic review and two, whether they fit one of the categories within our taxonomy of topics related to health system arrangements. We break it down according to governance, financial and delivery arrangements within health systems and implementation strategies. So implementation strategies being things like how do we support consumers to implement different courses of action or how do we support providers to implement guidelines, for instance? And so all of the documents in the health system evidence are categorized according to one or more each of those different pieces within the taxonomy. So just given a very one screenshot of the database here, I didn't want to add in a bunch of screenshots to overwhelm you, but essentially under the topics piece, once you press the plus sign in each of those different menus that expands down into more and more categories and you can search by category and then you can also combine it with an open search. I'm not sure if you can see my mouse as I move it, but you can click on the plus sign to use the open search and you can combine it with search terms in areas that are of interest to you or we also have a series of limits. So if you're only interested in systematic reviews that include at least one study from Canada, for instance, you can go into the limits slide and we have a list of all the World Bank countries and you can click on the countries that you're most interested in and limit your search to those that only include countries from the ones that you selected. Or you can within that I think I have my next slide for one of the themes that we've included on the limits, which is optimal aging. So within health systems evidence, if you click on that limits piece, you can then go and search only for those documents that we've categorized as being relevant to optimal aging. So these are all the ones that get pulled into the optimal aging portal, but if you're only interested in health systems evidence then this would be where you'd go. So the theme here, under optimal aging we have 12 evidence briefs, which I'll run through what evidence briefs means in a little bit, but essentially packaging research evidence about a problem, options, and implementation. Two overviews of reviews and then we have 813 systematic reviews about policy relevant interventions or health system arrangements related to optimal aging. And 696 of those reviews are reviews of effectiveness studies and the rest are addressing other types of questions that might be addressed by things like qualitative studies or synthesis of qualitative studies. And so almost all of these reviews address, and this is consistent with the rest of the content in the database, address content related to delivery arrangements within health systems. So how are we crafting how by whom care is provided or the types of packages of care that might be put together for people using case management, effecting this upon care as compared to other sites, those types of things. And then the other major categories implementation strategies. So how might you use information in educational campaigns to support implementation of adherence to medications, for instance, for consumers? And then we also have several reviews that are in progress and things like Cochrane protocols that we've categorized and those that are being planned, which means titles that have been registered either with the Cochrane collaboration or with the new registry called Prospero through the Center for Reviews and Dissemination at York University. So in terms of evidence briefs, I've mentioned a couple times that what I really mean by it is that it's this, it's approach that we take at the health forum to mobilize the best available research evidence about a given policy context and then more specifically about the pressing problem. So here we work often from the level of what are the, how does the problem affect or relate to a specific indicator, a group or disease or a condition, but then also how does it relate to the programs and drugs that are currently in use and then also the system level arrangements and then also whether the problem relates really more to the implementation of agreed upon course of action. So that means that the problem might be that we actually have the right policy on the books, but it's just not being implemented properly. So effort should instead focus on implementation strategies to support that existing policy to get it taken up more broadly across the province or across the country and so on. And then within the options piece we work iteratively usually with the steering committee to craft either options or elements of a potentially comprehensive approach for addressing the problem. So these are packages of health system arrangements or interventions and we usually develop three of them to address the problem. So one each section flows from each other and what we do in this section is mobilize all the available systematic reviews related to each option and summarize them in terms of the benefits, harms, and costs as well as stakeholders views and experiences related to those options. So all based on the available systematic reviews and provide that in a synthesis in the evidence brief and then conclude with an implementation section on the implementation considerations. So things like the barriers that we might face in implementing any of the options as well as any potential windows of opportunities that the people in the room might that are coming for the stakeholder dialogue might want to consider when they're when they're deliberating about it. And one of the key things is that we don't provide recommendations in these evidence briefs. The idea is that they're an input to discussion and not an end in themselves. So we don't want to preempt any of those deliberations by providing recommendations. We want people to come into the room having read the best available research evidence with no recommendations and coming up with what they think are the in terms of that brief. So I think that covers that slide. So this is just more of the schematic. Most of you are probably familiar with the evidence pyramid. So we've just put evidence briefs further along in this evidence period to note that it's a different way of packaging systematic reviews of research and putting it in the form of an evidence brief that really speaks to the ways in which policymakers think about a given issue. They don't think about issues in terms of methods, results, and discussion. They're thinking about what's the problem I need to address and how am I going to solve it and implement it once I pick a solution. So that's what we're trying to do in packaging those and using all the systematic reviews and relevant local data and evidence to inform that. In terms of the stakeholder dialogue, so those briefs are the input to those to these dialogues. So the main idea is to allow the research evidence in the form of the evidence brief to be brought together with the views, experiences, and tacit knowledge of those who are involved in or affected by the decisions that we would be made by this issue. So we often have people like policy makers, researchers, heads of professional organizations, and other stakeholders in the health system come together. So it's a very unique chance for these individuals who've almost literally never sit in the same room together to come for a day long off-the-record deliberation about a pressing policy issue. And so in these stakeholder dialogues we follow what's called the Chatham House Rules. So participants are free to use the information received during the meeting when either the identity or the affiliation of those speakers or if any other participants can be revealed. And that's just a long-winded way of saying that people are meant to feel as though they can share things without having to turn around and having those points then attributed to them in the media. So this is really important for dealing with sensitive issues. And we have, for instance, the system deputy minister or deputy minister in the room, they don't want to have their statements attributed back to them. And some people have come in and said that's the first time that they've been able to speak frankly in a group like that about a given issue. So it's very powerful that way. And we don't force consensus in these things. So the idea is that many groups or virtually no groups can come and indicate or make a commitment to funding or policy or something like that during the day. They have to take it back to their respective organizations. So generally we have agreements on various areas where there might be collective synergy, but we don't force commitment on people to coming out of the day. So in terms of the participants we invite, so we choose people based on two broad criteria. The first is that they need to bring unique views and experiences to bear on a challenge and learn from their research evidence and from others views and experiences. And the second is that they need to be someone who's well poised within their constituency to champion actions that will address the challenge creatively. So that's why we're focusing on people like assistant deputy ministers or deputy ministers or heads of organizations. These are the folks who can come back to their organizations and say this is the way we need to go. We need to really think clearly and long and hard about how to make this happen. So I just wanted to give you an example of an evidence brief that I recently led that we can be in a stakeholder dialogue for that would have been related to aging. So this is the most recent one. I did vote a couple years ago about organizing a care system for older adults in Ontario, but this is the more recent example that we ran in for a dialogue that we ran in October. So it picked up on the notion that the growing prevalence of multimorbidity with the fact that the prevalence of morbidity grows steadily as people age. So by multimorbidity if you don't know it just means people living with three or more conditions. So there's a couple different terms being floated around for multimorbidity. This happened to be the one that we picked up for the brief. So this idea of people, complex patients, people with high needs in terms of their care, it has a lot of implications for healthcare utilization expenses. So you might have heard some of the statistics about one percent of the population, the most complex patients in the system driving 33 percent of the costs in the Health System Ontario and five percent of the most complex patients in the province driving 66 percent of the cost. So it's five percent accounting for two-thirds of the costs in the system. So that in addition to those utilization expenses, it has a lot of impact on their family and caregivers as well to receive integrated care that helps achieve their goals. So they're bouncing from many different providers and they're not always sure how to integrate that care and they're often taking many, many different medications and how do you manage one disease when another one has competing demands and some of the treatments might be counter indicative and I think the list goes on for the challenges. So in the brief, that was in a nutshell for the problem. There's much more detail in the brief. But for this one we had three elements of a comprehensive approach that focus broadly on how do we form integrated models of care for people with multi-morbidity specifically? How do we start developing guidelines for care? So guidelines and treatment guidelines are almost always exclusively focused on single diseases which a lot of people during the dialogue and other people we talked to just said it's very difficult when you have someone sitting across from you that has three different conditions while with competing demands. So discordant conditions for example. So how do we either develop guidelines or guidance for how to approach these complex patients? And then also how do we support self-management? So ways in which people can really take charge of their own care given the complexity that's involved with it. So essentially what we found is very limited evidence from systematic reviews. There were only a handful of reviews that we found which on one hand is disappointing but not surprising. And then on the other hand it's helpful to know when there isn't evidence because we have to move to other things that we can think through like people's views and experiences on what's being done already. So from the dialogue the main feedback that we came out these are just the main themes. So we have a dialogue summary that came up from the day where all this is documented. The idea is that we need to stay at the course by continuing to support bottom-up and person-centered approaches to developing models of care. So there's a lot of emphasis on the need to focus on this patient-centered, person-centered approach to care and thinking about how do we construct care around their goals and not necessarily around health outcomes specifically. There's some people saying that we're never going to get these people fully healthy because a lot of them are just always going to have at least one chronic condition. So how do we get them to meet their goals like enhanced functionality, enhanced functional movement and things like that. And within this broader staying the course theme was the need to begin to identify those at risk in particular vulnerable or hard-to-reach populations. So lots of people talking about not only thinking about the five percent but how do we prevent those that are in the 45 to 50 percent tipping over to the five percent monitoring and evaluate the types of models that we might put in place. How do we identify how we might scale up successful approaches in building capacity among providers to use these approaches. And then the other key findings were the really the need to move forward with developing evidence-based guidance about people with multimorbidity and there's lots of work that's now kind of started to level up in this area. And then also embracing innovative collaborative approaches to developing and supporting self-management management tools. So going beyond the usual approaches to things like using social media or online tools to get people more engaged. Now then most relevant to researchers in the room would be articulating a research agenda to address terminology issues in the many unanswered questions. So there's so many things to explore. So I've only got a few more slides left. So last one is about citizen panels. This is a relatively recent program that we have at the forum where it provides the opportunity for a group of citizens who are usually aiming for about 10 to 14 people to learn from the research evidence on high priority issues. So we take a somewhat different approach because obviously in evidence brief that's very that's much more detailed wouldn't really work. So we have a we often turn those evidence briefs into a plain language citizen brief that uses the research evidence but presents it in a much more approachable way and present them with the three options and implementation considerations and get their feedback on it. So the idea is that the citizens views can then inform what the policy can also inform the policy decision making process as well. So it's not only research evidence but it's also citizens views. And so this is relatively new. We've only done a few of them so far and I think the the ones we've done have been on multi-morbidity and also on end-of-life care. So two things very relevant to aging. And then the rapid response program. So I previously ran a rapid response program in the HIV sector in Ontario for about six or seven years at the Ontario HIV treatment network and now we're doing it at the at the health forum. So the general idea is that a policymaker or stakeholder group submits a question that's relevant to that they really need answered or need some research evidence about and give us a timeline for three 10 or 30 business days and we produce a really quick rapid synthesis of the available systematic reviews and sometimes primary research evidence in the area related to the question. So the idea is that this fills a gap between what we call self-serve approaches like these one-stop shops like health systems evidence or the optimal aging portal and full-serve approaches like convening a stakeholder dialogue convened by informed by a very detailed evidence brief. So instead we can get things out in weeks or a month. So the example I've given here at the screenshot is the first one of the first ones we did about examining effectiveness and cost effectiveness a real bit rehabilitation care models for frail seniors. So I get another aging relevant question that we managed to to do and this was a 10-day response and it's available on our website as well. And then lastly health systems learning. So this is relatively new as well. We've just launched it recently and kind of pilot tested it with our undergraduate program with the Bachelor of Health Sciences program and their third-year class for health systems and health policy that John Levis and I teach. And it's an educational program that provides online and sometimes in-person training about how to reform or new or strengthen health systems and how to get cost-effective program services and drugs to those who need them. So the general approach is to build capacity of policymakers and stakeholders who are interested in this field and it takes them through a series of modules about how the questions to ask when clarifying a problem, identifying options, and implementation strategies, the types of research evidence that can help in each of those, addressing each of those questions, and the sources of research evidence that they should visit for each of them as well. So it's very practical and then the some of the more in-depth modules also teach them how to do things like quality appraisals of the available systematic reviews, how to do assessments of local applicability, and then for the in-person one it would also be someone like me or John going and actually working with them and answering questions and getting them to work through each of these modules. So I think that's it. So just a few acknowledgements to people who shared some of their slides with me and the funders of the many programs that I mentioned during the presentation. And then I think other than that I'm happy to take questions so hopefully I didn't go too far over time. So any questions either? So we have a group of us in the room here as well. So if anyone asks a question from in the room I'll just repeat it for those that are online and then those are online they're just supposed to type it in the chat box. Hi there Michael. Yes thank you very much for this very very interesting presentation. We do have a couple of questions in the chat box which I will read out to you. I think that's how we'll handle it and I'll turn off my talk after I read the question so you could respond. As someone who actually started my academic career in the policy area, my bachelor's in political science and I have a master's in public policy, I found this presentation extremely interesting. We as researchers and most people who are part of the audience today are probably from the research end of things. We tend to and you had mentioned this earlier in your presentation we tend to think about intro methods results discussion and policy makers don't think that way. So the challenge for researchers is always to take the evidence that we produce in our studies and try to translate that evidence into something that policy makers may consume and it's especially important for the CLSA. We do have a great deal of funding from government and a great deal of interest from government precisely because they can see the policy value of the information that can come out of CLSA but that information will come out as academic research outputs. So presentations such as this that allow researchers to think about evidence from a policy perspective certainly helps to bridge the gap between research and policy and it feeds right into knowledge transmission. So this is very helpful and we do have one question. Are you able to provide a general indication of the research literacy of people on the policy side versus the general population? So actually the question is a good question it's just unfortunately very hard to answer. I think if you're comparing the folks working in policy shops within the Ministry of Health for instance I think you know their research literacy is higher than that of the general population I would say and then but I guess it's hard to say what their general literacy is saying. There's some people who are very very research savvy and others who may be less so but I think the idea is really focusing on the training piece and getting everyone working within those types of shops to go through some basic training about how to find and use research evidence to inform health related policies. So we've done a lot of that in Ontario. The training that John and I have run before is supposed to have been become mandatory training for most of the groups within the Ministry of Health and that's part of the reason for doing these online training modules now so that we don't always have to be doing them in person and they can do them online through these modules that are available to them and part of building that literacy comes from leadership as well. So it just happened that for a while in the Ministry of Health long-term care they had an assistant deputy minister who's just so in tune with the importance of using research evidence that he was able to promote that and permeate it through all of the workings of the of the Ministry of Health and Ontario quickly went from an example that didn't do so well in looking at research evidence consistently to what we think of as being one of the leaders not only in Canada but also around the world for consistently looking to develop a research evidence and using it to inform their policies. So things like the Excellent Care for All Act, putting in that research evidence tool to think about it, doing all this training for people working in the Ministry of Health long-term care is really important. But then on the other hand, we go in and do this training sometimes and what we end up talking about often just blows their mind. So they haven't heard of many of the resources or just generally thinking in the way of how to do this type of policy analysis and it blows their mind in a really good way but you know so I think sometimes it speaks to the need to really just kind of keep going with these trainings and our offerings and providing those resources to people working on the policies. So the other question is what background or training is offered to facilitators of the evidence briefs in their role in moderating the discussion. So in terms of writing the evidence briefs, it's people with some research expertise but then also expertise in thinking through policy issues and really there's a small number of us that do it. It's me and John Levis and Kailin Mote in François-Pierre Gauvin who's our lead of evidence synthesis at the Forum and our Francophone Outreach and then also some other people who contribute here and there but it's kind of a different way of doing things and it's I think it's an area where we probably need to do some more training about you know how to get people engaged in actually producing these briefs so it's a good point. And then the other and I should say there are a few other groups around the world who are interested in doing this and John has done some training for those groups as well trying to get them to ramp up similar shops for how to do these evidence briefs. But in terms of running moderating the circular dialogue sessions you know that's a real skill and it's very difficult so every single dialogue that we've run John Levis has facilitated them so he's just someone who has a lot of skill in being able to do this. You have to manage a lot of different people in the room, keep track of everyone who wants to speak, be able to synthesize very quickly what the key themes are coming out from the day and really put it back as questions to people to really grapple with as the discussion goes forward. So it requires a lot of skill. I being junior in my career it's one of those things that I'm hoping to be able to do but I think it's one of those things I have to build up over time. So unfortunately it's one of those I think as you're kind of indicating in your question one of those things which would also require a lot of capacity building. Michael. So any questions? Were there questions in there when there's a couple of you were in the chat that we had got pushed up in the school and Oh sorry. I'll read them out. You mentioned that there are evidence briefs and criticism briefs. How do the two different style and content? Yeah that's a great question. So the evidence briefs the writing is just at a much more complex and higher level and it can often you know we have to be attentive to the audience that we're writing to but we're also really basing this in research evidence so sometimes you can get a little bit technical in terms of the results that we're presenting. So it can be more of a dense read whereas the citizen briefs are the ones we've done have really focused on the evidence briefs we've already written so it's kind of pulling out those higher level messages from it and putting it into a format and writing that's more accessible to citizens. So the text is often bigger, the headings are more often more engaging, the almost everything is in bullet points and we try to be much more succinct about it. Not going to lie it's a bit it is a bit of a struggle to pull these together because you're a bunch of to some extent researchers sitting and trying to present this to a citizen in a way that they're going to understand which is very very difficult. So I think the feedback so far is that the briefs were relatively well received but we could do a better job and present them in the slightly more accessible way. So I think this is going to be an ongoing learning process on both sides until we get a good model that works. So the good thing is that one of the people that works with us, Francois Pierre-Govain, has done a lot of work in the area of public engagement and has worked with Julie Abelson and Julie Abelson, Epic Master is probably one of the leading people about public engagement in Canada and the world is helping is working with us very closely on the citizen panels. So that's been a great resource. So we're constantly working with her and others to try and put these together in a very accessible way but that's generally the approach. Thanks and there's one more question on the chat. I recognize that the focus of this presentation is health research. Are you aware of other policy areas that are utilizing similar collaborative approaches between research and policy? That's a good question. I feel like most of this, at least as far as I know, a lot of this stuff is focused around health just because it tends to be one of those bigger areas of research. There is a group in Australia called the SACS Institute who's interested in doing a lot of this stuff and I think another group as well and I think some of their interest lies a little bit beyond health as well. So that might be one example where a group is primarily working in health but is extending it beyond that as well as doing this type of work. But I think it's a good point about maybe looking more broadly to see some more examples of people doing this but I do think what we're most familiar with is in the health area. Thanks and one quick question from me and then if there's any questions at the MCC I'll turn it over to you guys to ask your question or maybe this is more a bit of advice to give. What I often notice in student protocols and also even in grants that I review in the knowledge translation section students and researchers always like to include conference presentations and journal articles as part of the knowledge translation strategy but academics have been doing that for centuries. My understanding of knowledge translation is that it is something done to bridge the gap between research and other forms. So conference presentations and journal articles to me doesn't seem like knowledge translation in the sense of using the word to reach other stakeholders. So could you comment on that please? Yeah that's a great point Mark and so the way I approach it in my grants that I write at least and I feel like I've had some success with it is I always try and segment my KT sections into integrated and end of grant KT. So end of grant knowledge translation being those typical or usual suspects that we're going to do at least one publication we're going to give a presentation at one or more conferences all those types of things you just talked about whereas the integrated KT is more about how we're engaging all the relevant stakeholders from start to finish and afterwards as well and the and any other kind of interesting and creative ways that you're going to support the use of the evidence that you're developing. So in a few grants that I've done you know we've worked into the KT section to do either some sort of interactive workshop or a dialogue at the end and the way to bring people together to actually constructively discuss the findings and work through any remaining issues. So I think the the key point is how are you going to work in any some more interactive and engaging strategies with the audience of your research and not just writing a journal article and also it could be depending on what you're looking at it could be things like writing very engaging user-friendly summaries of the of the findings you did so not going beyond the journal article and writing a summary about what's the bottom line and so some of that we've tried to do in the McMaster Optimal Aging Portal where we could be citizen summaries of systematic reviews trying to give them just a you know a very quick half-page or one-page distillation of what the main messages are. Thanks Michael are there any questions from the people at the NCC? Yeah we have one. Yeah great question so for those that are online the the question is what's our business model for doing these types of activities do people come to us? Do we go to them? Do we do it just in province or out of province or internationally? So in general it's what we're working with different clients so often the questions are very user-driven so we have I think it was the Ministry of Health or another stakeholder group they're just really interested in pushing the agenda forward on a specific question and they work with us as kind of a neutral convener for these dialogues and to put together the evidence brief and so on and so yeah there'd be some sort of contract in place to do that and then the other model is we've had some reasonable success with CIHR and getting some funding to do some briefs and dialogues as well so we applied to a series of expedited knowledge synthesis a few years back which is what the multi-morbidity one was funded through so but it's still even with that even though it's coming through a funding agency all of the questions submitted to that expedited knowledge synthesis were from ministries of health in Canada so we responded to those questions with with our approach and so we managed to get some funding through that and so it's not just Ontario we've done a couple local ones that one about Hamilton I think is about poverty we've done many provincial ones in Ontario and also other provinces I think we did one on rural health in Saskatchewan a number of years back we did one on genetic tests and and other related technologies in British Columbia we've done some Canada wide ones we just did one on often supporting integrated screening approaches in Canada which was one of the last projects that the health council of Canada was interested in push in getting some work done on so we partnered with them to do that particular one and then we've done some international ones as well so we did one on pandemics most recently so there's any number of models yeah and then the other pieces we had some funding from the new health services research or HSRF from the ministry I always forget now what it stands for health systems research fund I think so it funds the rapid response program which is currently just provided in Ontario and then a certain number of briefs and dialogues each year but no core funding so we don't have core funding great I think that's going to wrap it up unless there's another question from the MCC nope I think we're good here okay great well almost at the end of time anyway so I think we'll call it a date Michael thank you very much as I said earlier the presentation was very interesting and it helps us as researchers focus our thinking differently to meet the needs of stakeholders who will be interested in the CLSA data so thank you very much I think this was a great start with respect to our re-energized seminars and I don't think we could have asked for a better kickoff presentation than on the day today so on behalf of all of us at CLSA thank you very much well great thank you Mark and thanks for having me it was my pleasure it was our pleasure to and we will send out details of our next seminar around service and have a good afternoon


of State Statenius through the successful nine-week meeting. Mr. Statenius, who has now been named United States representative to the new international organization, is presented with a scroll in recognition of his efforts. Full of the charter of international organization, and the heads of the 50 United Nations delegations rise to be counted, the vote is unanimous. As the session adjourns, delegates burst into applause. The Charter of a New World is born. Arriving in San Francisco for the final conference session, is President Harry S. Truman. He is met by Mr. Statenius with the U.S. delegates and the chiefs of the 49 other delegations. Among them, Field Marshal Jan Christian Smuts, Premier of South Africa, and the Prime Minister of Canada, Mr. Mackenzie King. President Truman leaves for a brief tour through San Francisco. His is the first visit to San Francisco by a chief executive in seven years. Half a million citizens turn out to hail the presidential motorcade. National effort are climaxed by the signing of the United Nations Charter. First to sign is China, the first nation that suffered Axis aggression. Dr. Wellington Koo signs with a traditional Chinese brush. The delegation of the Soviet Union, Ambassador Andrei Gromyko signs for Russia. Truman is represented by her delegation chairman, Lord Halifax. The team delegation chairman, Joseph Paul Bonkoo. Nations to sign is the United States of America, Secretary of State Statenius. Ladies and gentlemen, this is an extremely historic occasion. The Charter for World Peace has been completed. But this is not the end. It is only the beginning. The great task lies before us, and it is our solemn and our sacred duty to see to it that the United Nations comes into being and fulfills its promise with faith in our cause and goodwill in our hearts and determination to work unceasingly toward this end. I am confident that with God's help, we shall reach our goal. Senator Connolly is next to sign for the United States. Senator Arthur Vandenberg, Harold Stassen, former Governor of Minnesota, formal session of the United Nations Conference, President Truman congratulates the 280 delegates and expresses the world's hopes for the new international organization. The honor of the United Nations, which you are now signing, is a solid structure upon which we can build for a better world. History will honor you for it. Between the victory in Europe and the final victory in Japan in this most destructive of all wars, you have won a victory against war itself. If we had had this charter a few years ago and above all the will to use it, millions now dead would be alive. If we should falter in the future in our will to use it, millions now living will surely die. Now, there's a time for making plans and there's a time for action. The time for action is here now. Let us therefore, each in his own nation and according to its own way, seek immediate approval of this charter and make it a living thing. By this charter you have moved toward the goal for which that gallant leader in this second world struggle worked and fought and gave his life, Franklin D. Roosevelt. This new structure of peace is rising upon strong foundations. Let us not fail to grasp this supreme chance to establish a worldwide rule of reason to create an enduring peace under the guidance of God. In a note of enthusiasm unequaled among nations in all history, the San Francisco Conference is adjourned. In the United States Congress and among free people everywhere, the efforts of the chief architect of the United Nations are remembered. Remembered to are the words he spoke shortly before he died on World Organization, expressing his confidence that... Congress and the American people will accept the results of this conference as the beginning of a permanence upon which we can begin to build under God that better world which are children and grandchildren, yours and mine, children and grandchildren of the whole world must live and can live.


Good afternoon everyone welcome back to this workshop.  My name is Sarah Hull. I It's my pleasure to introduce the next session The goal of which is going to be to really drill down on on some of the the questions and the issues that have been touched upon in the morning session related to the the challenges of designing research engaging citizen science in an ethical manner and and developing approaches to oversight of mine. Have I been muted that whole time? Shall I begin again? My name is Sarah Hull and I it's my pleasure to help to moderate the next session, which is going to delve into questions I identify some of these challenges and and hopefully also some concrete models and solutions related to the ethical design and oversight of citizen science. I come to these issues from the perspective of a bioethicist who works at the NIH who works within the federal government For for 16 years. So so quite a long time I am trained as a social scientist who's interested in Soliciting the perspectives of members of the public perspectives that have been missing from debates in bioethics And and yes, I also come at this from the perspective of an IRB chair I am the IRB chair that that PHO mentioned this morning I'm that Sarah and no you're not in trouble for your mini survey Both because it was conducted in a manner that collected the data in a de-identified fashion But also because I'm not here to serve as the ethics police today I'm I'd like to shed the view of of IRBs at least in this space and for purposes of our discussion as an adversarial kind of a relationship. I think there's much to be gained from constructive Conversations on what I think are probably at least on their face shared goals of designing citizen science in a manner that's rigorous responsive and valuable to the communities that It's engaging and working within designed in a way to minimize the harms of the research to the participant and and maximize the benefits designed in a way that's Transparent and holds up to scrutiny And so those are some of the conversations that I hope our panel will will help us to engage in we have a number of diverse perspectives represented on our panel and like the first panel we're going to go in a slightly different order than what's listed here in the in the agenda, which I'll I'll walk us through in a second, but Some of the questions that that I'm hoping will be able to engage with our panelists and as well with everyone else in the room who certainly has Great experiences to bring to bear on these questions So I'm in the world that I work in I'm familiar with a fairly well-described set of research regulations oversight tools and frameworks and I'm interested in exploring to what extent those frameworks can be adapted and applied to the context of citizen science To what extent those frameworks are inadequate and have failed to anticipate the unique Perspectives of new players who are becoming more involved in research in different ways So if I start with the question of what I'm familiar with I'm wondering to what extent what I know plays out in this setting and When we bring in people who are coming at it from different perspectives what values and ethical principles and Formulations of the existing principles can we spell out to? Ensure that this research is conducted in a transparent and ethical manner. So some of the questions we can explore In general, how do we understand the need for independent oversight of research who is now independent from the research Who's inside versus outside and who can give an objective perspective on on the ethics of of what's being proposed? Some how do we think about role-based? responsibilities and obligations when the people Involved are in the science and the design and conduct of the science are different and they're they're shifting into different entities and roles So we're now conceptualizing potentially as citizens as the scientists themselves. What does this mean for shifting obligations? These are some of the ideas that were raised this morning that I think our Would benefit from further exploration. How do we ensure diverse? representation of the various members of the the public In research and how do we protect their rights and interests as as we advance research that's of value to them So I'm coming at this with an entrenched view I am a member of the federal government, but I also Come to it with a very open and flexible mind, and I'm very excited to hear what What this discussion will reveal and I would encourage everybody to kind of come to it with that same Perception we have existing frameworks that have worked well, but are imperfect And so I think we have a lot to learn from each other So I'm excited to start by introducing Sarah Green who's going to lead off the discussion from PCORI


What? That was... That was amazing! Hello, American College of Dentists. College of Dentists. It's me, John Pullum. I was supposed to be your entertainer for your hundredth anniversary of the American College of Dentists, but, as you know, something came up. I'd like to thank Dr. Gonzales and Dr. Rawls. Well, well, President Rawls. I knew him before he was President Rawls. Thank you for asking me to be at your twenty-twenty-hundredth anniversary celebration in Orlando. In 2021, I will be back to entertain you live and in person for your hundred and first anniversary. Hundred year anniversary this year. It is totally amazing. Congratulations. Because of this pandemic, we can't meet face-to-face in Orlando this year and I'm totally, totally bummed. The twenty-twenty annual meeting and convocation of the American College of Dentists has to be done virtually. But, I wanted to be able to still entertain you with a little something right from the comfort of your home, your office, wherever you're watching this. Now, I'm not going to hypnotize you in any way, shape or form, but, in a second, you will see a spiral appear on the center of the screen.  It'll go to the center of the spiral.  Keep your eye on the cartoon of my face and don't take your eyes away. Now, just kind of let your eyes relax and focus on that cartoon of my face. It might feel like you're going into a tunnel or out of a tunnel. Either way is fine, but just kind of let your eyes and mind relax. I'm going to count downwards from ten down to one. And when I reach the number one, I'll tell you what to do, but keep your eyes all your focus on that little cartoon of my face. Ten, nine, eight. Just let your eyes kind of relax. Focus on that cartoon. Seven, six, five, four, three, two, one.  Now, amazing! I hope it worked as well for you as it did for me. The back of my hand was bubbling and boiling and moving all over the place. You can watch it again, show your friends. I really hope you enjoyed it. Dr. Ralls, Dr. Gonzalez, everybody else working on this meeting and convocation, thank you. Appreciate you so much for asking me to be part of your 100th anniversary celebration of the American College of Dentists. It's quite an honor. It's been great working with you guys in Vegas and in Orlando a few years ago. It's a wonderful, wonderful group of people, and I look forward to seeing you all in 2021. Until then, everybody, please, please stay safe, stay well, stay happy, and enjoy your 2020 annual meeting and convocation of the American College of Dentists. I'll see you in 2021. Good day, everybody!