Kelly Henderson Transcript

Transcript

1. 1 www.captionslive.com.au | captionslive@outlook.com | 0425 904 255 UX AUSTRALIA Design Research 2020 Day 2 Friday, 20 March 2020 Captioned by: Gail Kearney & Rebekah Goulevitch
2. 2 KELLY HENDERSON: Thank you very much. Apologies again for the delay. Thank you for that introduction. I also wanted to do a major shout out to yourself and Annabelle and everyone involved in putting this conference together, going through hoops and being great communicators. Thank you for navigating this very complex situation we are all working through. Yes, I am a public health person and I am amazed by what is going on, on the ground in different health systems around the world to try to address this major pandemic and hope we can all work together in doing that from where everybody is. I will just get started. The focus is called bringing a public health lens. I have a background in public health. One of the key things to design problems and for solutions is a result of my training in public health. I was drawn to it for a number of reasons. It has tools to address complex challenges. It has a commitment to social justice and health equity. My career path has spanned so many health and design challenges, whether it is children's health, reproductive health, digital health for people with chronic illnesses. Throughout my time, I have been really grateful for the foundation and background I have in public health because it is has been a driving force. Right now, I most recently was worked in digital health and a couple of months ago I moved to New Zealand and looking for opportunities here but very excited about some of the work I have been seeing in New Zealand and Australia when it comes to doing that design work. Things are changing as we speak and I might head back to the United States soon. But we'll see but great to meet you virtually now and hopefully in person at a future event. For this talk... (pause) to get started, just a very quick overview of the field of public health. Public health practice can be viewed an approach for maintaining the health of populations, based on the principles of social justice, attention to human justice and equity, policy and practice and addressing underlying determinants of health. The issue on the right is from the Canadian public health association. It does a nice job of highlighting the public core elements. So different programmes, evaluating them, evidence, risk assessment and developing policies. It is a quick baseline understanding of the lens in which public health is approaching and solving complex problems. The field is vast, as you are getting a taste of today. Anybody from a 1st responder to people doing epidemiology work, physicians, people who do occupational safety work as well. Such a variety of different areas you can be working in public health. For the purposes of this talk I will focus on areas where I spend a lot of my time in public health and that is social determinant of public health and key research. I will spend a few minutes talking about four tools and their application to design research. The first tool is social and environmental determinants of health, those are conditions of daily life in which individuals are born, grow, live with and age. I listed example whether it is employment opportunities, wages, potential packages, social or cultural norms, whether they are exposed to crime, and water and air quality to name a few. The current events today are really highlighting just the extreme different varieties of different social determinants of health people have in their lives and fortunately it is revealing - unfortunately it is revealing that to a great extent. I did want to talk about this because I think it is really helpful for better thinking about people's health beyond simply their
3. 3 individual biology and health behaviours so it takes it to another level thinking about what shapes an individual's health. And then next framework I want to talk about, the tool, is the social ecological model and it builds off the previous framework. It conceptualises individuals embedded within larger systems and describing characteristics and environments that can cause specific health behaviours and outcomes. (Pause) it helps to work to shape and influence people's health and also offers a valuable way to map out potential interventions they might be promising to address particular health behaviours or influencing health outcomes. So, in the image here is an adaptation of a model that is focussed on social preventions. On the far left, the intrapersonal, and it is the characteristics of the individual, the knowledge, attitudes and behaviour. And the next level is the interpersonal processes and primary groups. These are people's social networks, so whether it is their family, friends, the people they live with and their community, their coworkers, all the different variety of social connections they have. The next is the institutional factors. So, these are groups that are really regulating and providing rules for different things to operate in. The following level is the community factors. This is an interesting one because it is relations between organisations and institutions. (Pause) mapping out the broader level. And then the last is public policy. So, whether it's local, state or national, in place. I want to take a moment to talk a bit more about this tool and give an example. So, I was reading the paper to kind of think of a way to explain this and what it's going to look like and this paper is focussed on using the social ecological model to determine the determinants of whether a person gets a flu vaccine. During the H1N1... pandemic in 2009. We see this here. You can see that across the different levels there are a variety of factors influencing people's decisions. The researchers had a large sample of adults and decided people's decision on the vaccine is based beyond the interpersonal level, from someone's perception of risk and across every single level influenced people's decision to (pause)... conduct looking across these levels. So whether in this case it is looking at the influence of their social network, what the health care provider is sharing where them and their perceived risk in the community and what the broader policy looked like and whether they had access to get the vaccine. I think it does highlight, like I mentioned, targetting multiple levels is a critical part of any type of intervention and so just wanted a quick example of that and the link if you want to read more about that. So, next I wanted to now take those two tools and talk a bit about how that could be applied to design research. Using both the social and environmental determinants of health models helps you zoom out and see design problems from a broader system level perspective. It pushes beyond knowledge, attitudes and beliefs and seeing them within a broader social and environmental system and identifying a wider range of possibilities for design solutions. A couple of examples, the first one on the left is about redlining. I am going to talk about that, it is the denial of services to a area because of the area. And a residential security map was made during The Depression and they designed different areas, A through D, to describe how desirable they are for doing investment. Black, migrant and low income neighbourhoods were given gradings of C or D and limited their access to mortgage insurance or credit for decades. The map on the left
4. 4 is from a project called history of class, and real estate which looked at the practices of the 1930s and the impact in the Kentucky region to this day. A community-based project I was working on in the area, I used the tool as a valuable way of learning about the area as well as the history of structural racism and its lasting impacts as I was exploring people's experience managing chronic respiratory diseases in the area. Having the background helped me understand the interview findings and surveys being conducted with a greater appreciation of the social and environmental barriers that some groups were experiencing that impacted their ability to take their of their health in the day to day. (Pause) a reference for organisations that offer support related to addressing the challenging housing situations people were living in. People were exposed to mould and pests in their homes exacerbating the symptoms. The next example on transportation issues. Across many projects I have been a part of, patients with a variety of conditions, issues with transportation seem to be a key thing to come up when it comes to seeing their doctor or accessing medication. Whether that's due to reliable public transportation, challenges when it comes come to relying on family member for access to a car and ways to get around or paying for parking and having to walk from the parking lot to the clinic. All these different variables can have a pretty serious impact on people's ability to access their health care system. So, I wanted to mention this because partially I think transportation can be such a substantial barrier if it's overlooked or not accounted for when designing products or services you can miss a vulnerable subset of the user population. The ideas where worked with groups is around trying to account for this explicitly, putting the design for participants, if it is being conducted outside of their home and including as part of the potential incentive someone can access after participating to include a local transit card, that was something of value to them. Putting that as part of the research process. The last concept is around social isolation. And a deep-set feeling of isolation around a lot of the elderly patients I have interviewed over the years. I learned how this can potentially be some of the most challenging things people are up against in their daily lives. It has highlighted to me when designing services for older populations, it is a really important idea to determine the extent to which this is a social challenge for them. Really, what it looks like in their context and ensure that this barrier is accounted for and design decisions you are working on developing. I am going to move to another tool within public health and these are participatory research methods. I am going to speak about community-based ones in particular. It is a research approach that focuses on social, structural and physical and environmental... (pause) through sharing findings and really recognising the people experiencing the problem as the real source of expertise in the process. I actually want to do a shout out to Kelly Anne earlier, a nice presentation highlighting how valuable getting voices from the community is in that process. Digital story telling, people create three to five minute videos that create a variety of things such as photos, participant voices, drawings and music. And a typical workshop has a few components, one, a story circle where people create a short video about and then the script writing and revising, putting the multi media materials together and create a short video and the last is a story screening. The
5. 5 other method is an arts-based method, photo voice, it puts cameras into participants' hands to reflect upon and communicate concerns with a large push to having it support broader social change. In this case, working with a different group, sharing with them the broader prompt around what questions to try to answer by taking photos and then taking the photos, coming back together, discussing the photos and the last part is around doing an exhibit and having a larger community conversation about the findings from these photos. So, with the application to design research, I really think that using participatory art and research methods can help you zoom in and get a nuanced view of a individual's experience. Not only do they give you more insight into their lived experience, they are more specifically designed to have a tangible outcome that not only the participants get to benefit from but they can be screened, exhibited and showcased. Really trying to make it a more engaging way to get other stakeholders on board and learning about the different users and their experience. Two quick examples: The first is on the left, a digital story telling project called Go Hoven which used digital story telling to tell the experiences of young people in Central American countries as it relates to their accessing reproductive care. The stories highlighted a variety of complex cultural barriers people experience as well as the emotional burden they faced in trying to access care. (Pause) focussing on trying to make contraceptives more accessible to minors. And then on the right, the veteran's affairs system in the United States was using exploratory research and an early stage of a project they just began. The system focussed on disease-problem-based care and they were working to transition to be more patient-centred in their care. Part of that was trying to understand what patients were looking for and what their idea what patient care meant as well as to assess the initial initiatives they put in place to be patient-care centred. They asked a group of patients to go out and use cameras to help to showcase what it means to them to be patient-centred to what extent the VA system can do that. The photo is what someone took to show having a bench close by an elevator was particularly helpful for them, helping them to take a rest in between, as it takes longer to get there. One of the big learnings was how (pause) the last tool I'm going to speak about is ethical decision-making. So, there are a number of public health frameworks aimed at supporting ethical decision-making when it comes to evaluating programmes, interventions or policies. They help set ethical boundaries and the ethical foundation for public health. The one I am going to speak about is the decision-making triangle. It consists of evidence, theory and possible improvement actions and compare potential actions. I think one of the key things about this, it tries to expose the application of a particular set of ethical principles. So then, for the last one I'm going to talk about how it can be applied to design research. So, using the ethical frameworks and lessons from past research on public health can be important reminders to keep ethical principles top of mind and keep them in focus as decisions are made throughout the design research process. I think the lens encourages decisions to be guided by ethics kind of front and centre. And I'm going to talk about a couple of examples of what that can look like or when it doesn't work. So, I also wanted to mention before going through the examples that the public health lens does also offer really valuable lessons on design and research on what not to do.
6. 6 There are a number of public health projects that remind how critical it is to establish principles and live up to them. It resulted in the Belmont Report, outlining a few key issues that a human subject has to be held accountable when they do their work. I do think establishing a uniform set of design research ethical guidelines would be really valuable for this field. To really ensure there is more uniform and ethical lens that is applied across the projects we are working on. For a couple of the examples, the first one, some of you might have heard about this, but last summer a story broke about how a number of smart watch devises and fitness trackers had a feature for monitoring heart rate that did not work or significantly less accurate for people of colour. It used a simpler and cheaper infrared light and did not work well on darker skin tones on heart rate (pause) ways to work, it did not. And her partner, who is white, immediately had the tool work for them. She described as not an issue of placing it on my risk, the tightness, not my blood flow, it is issues with my dark skin. She tried to call the company to provide a product that is inclusive for all skin tones. This example raises a number of important questions and it makes me wonder a bit about what the recruitment process looked like for designing this new device. Who was included in the phase, who had been excluded? How do they make decisions moving forward potentially knowing the tool is not going to be as valuable for certain groups? It also makes me wonder what if one of the design research principles they were operating under was supporting inclusivity or diversity or any variable that would have caught this early on. How could this have turned out differently? So, I think it really does bring up another question of how valuable and important it is to think about having a representative sample when you're doing your research. The second example I wanted to speak to is in the field work process. So, 10 years ago, I was involved in public health research project in South Africa that better tried to understand the experience of teenagers with HIV or TB. The research programme included inhome intensive interviews and we learned about teens who experienced significant trauma from abuse, to rape, and they were struggling with their mental health. It was really clear that we had the responsibility to help out with the high-need research participants, something that was beyond the scope of the research project but critically important in making sure we were taking a role in preventing harm for the participants. The team decided to develop a social services referral system to direct those in high-risk situations with local social services. I thought it was a good example in reminder of doing ongoing ethical checks during your field work as well as preparing additional resources for participants to prevent, reduce, limit harm as much as possible. The last example is around design recommendations. And across the variety of projects I have been a part of over the years I have realised how important it to have your team's ethical principles established as criteria for recommendations from the research. There can be a number of constraints that come into play when design recommendations are presented to a broader stakeholder group, budget, capacity, other types of priorities. Ensuring that (pause) limited to stakeholders that meet specific ethical standards is particularly important. So I think I got to questions to keep in mind when assessing possible design recommendations. I jotted down a couple but to what extent are all users benefitting from the design? The design change, the design direction? What user population does not benefit? Who is getting left
7. 7 behind? To what extent does it empower users? I think this exercise is important in the work I have done supporting projects and services in a digital and non digital experience. In particular for those users who don't have access to technology and those that do. I think it also helps make me think of the decisions you are making in a really important way and like when it comes to the digital divide, like I mentioned (pause) what we talked about here, zoomed out from defer angles and zoomed closely in, keep it focussed. Get a more comprehensive nuanced view. The plans, the process and the outcomes. The public health lens offers design research and a new set of tools and frameworks to root your work in social justice and explore solutions that acknowledge, account for and potentially target various social systems in which your users are embedded. Also offers methods that support creative expression and helpful examples of the critical role of ethics in decision-making. Whatever type of design research work you're focussed on you have opportunity to bring a public health lens into your work from the early stages. I am really grateful that I am able to take my training in public health and bring it with me every day to the design research that I do. I know this was quite quick but I do hope it has been a helpful look at a few ways to bring a public health lens to the work you do today. And, thank you!