Using Social Media to Battle Disparities in Health Care

Elizabeth Myung Sook Krause and I were on the same panel at the Grantmakers in Health annual meeting last month, and she began with typical self-deprecating humor.

“Being young and Asian, I know I’m supposed to be good with technology, but I’m really not,” she said, mentioning the decidedly low-tech cell phone she had just replaced. She got a nice laugh, but the truth is—technical or not—she is serving as program officer on the kind of social media project that will shape the new face of philanthropy. And, fittingly, she now possesses a shiny new iPhone.

Krause, a senior program officer for the Connecticut Health Foundation, is overseeing a project to motivate the public to take a stronger interest in the racial and ethnic disparities in health care delivery. What caught my attention is the heavy focus on using social media to complement offline efforts.

Krause was kind enough to spend some time answering my questions about the initiative.

Let’s start with the big picture. Can you give me some sense of how this project got started?
It relates to the Connecticut Health Foundation’s 10-year strategic objective to create public will to eliminate racial and ethnic health disparities. We had invested in a number of programs over the last 10 years to try to make a dent in a very complex and intractable social and health care problem. We had limited success in doing things like increasing the diversity of the health care workforce, trying to improve medical interpretation services, a lot of the fairly typical strategies. What we realized was missing was a critical mass behind these efforts. We needed to really have some public support to elevate the issue of health disparities and health equity on the public agenda. The board adopted a strategic objective to create public will over 10 years. We know that it will be a long process. When we were looking at the various approaches, tactics, tools that we could use to build public will, we decided to incorporate a social media and online community piece to our strategy.

Can you talk a little bit more about those social media and community pieces?
We did a social network analysis, which is sort of a hot thing for foundations to do. We found that there were some very difficult geographic barriers in our state. If there are geographic barriers in Connecticut that means there are geographic barriers to collaboration in every state. When you are trying to create public will you really need to bring people together. We decided to use social media as a tool not only to expand the network but [to] hook the existing network together in a more cohesive way. As a small foundation, we didn’t have the internal capacity to implement the social media component in-house, so we decided to get into the social media world by working with a grantee. (The Society for New Communications Research). We asked them to be our partners and to work with us more as a cooperative agreement than a traditional grant on our social media approach.

And specifically what approach are you planning to take?
The idea was that we would take a multi-platform strategy. Instead of developing a single hub or Web site for people in Connecticut to visit to have conversations about what we can do to create health equity, we are going to try to push into the existing online communities in which we know people already participate. We are also developing what started out as a microsite. While we do want to push out to a lot of already active online communities, we [also] will try to have our own site that unites everybody and pulls them back. We just finished a long period of planning. There was some base line scanning that showed us that there aren’t many online or offline conversations about health equity happening in the public domain—certainly within certain academic and research settings, but not with the broader people of Connecticut. We also went through a process of developing a strategy with the grantee. There we had to bridge content expertise about health disparities, content expertise about communities of color in Connecticut with content expertise on communication and social media strategies. We are also implementing an online survey to get some baseline information so that we’ll have some indication over time if we are being successful. We also have put together an advisory group. Now is the time where we are really developing that microsite and starting to plan out our Facebook and Twitter presence.

Is it fair to say that your goal is mostly to generate conversation around this issue?
Yes, at least in this first year it is very fair to say that we need to learn about how to effectively have conversations about this issue online. I think with any public will building initiative, how you define the problem is very important because that has implications for what the solutions are. There are so many interpretations of what the problem is with racial and ethnic health disparities that people are all over the map with how they understand the problem and how they understand possible solutions and how they can then be part of the solution. We need to figure out how we can talk about this online in a way that resonates with people. I think we also want to bolster our existing network of supporters on the issue. We know a lot of them, at least in this state, are not currently up to speed with the tools of social media. To get them active, because we know they are likely allies, we want to help build their skills and comfort participating online. We also want to use both online and offline social networking opportunities to feed each other because we think there does need to continue to be a strong, real world component to how we address the issue. Social media will enhance our efforts. [We want to understand how] we [can] use social media to drive people to real world events and real world events to drive people to participate online. If we could begin to do those three things well our first year, I think the foundation would be very happy.

You are going to be out on Twitter, you are going to be on Facebook and some specific online communities. At the same time, you have decided to build your own presence …
[Our] microsite will have a Twitter feed on it and will be linked to Facebook and what not. We are going to try to do things to foster engagement. We’ll have little quizzes people can take when they come to the site or they can submit questions to an expert and then we’d have different people weigh in about how they see the issue and what their suggested solutions might be. These are just various ideas that we are playing with.

You said that initially you weren’t planning to have your own microsite, but you changed your mind. I’m curious what the thinking was in deciding to do that after all.
We came full circle. When we were first trying to decide what we were going to do, the vision was that we were just going to create a Web site that would be ours. That we would have THE place to come talk about the issue online in Connecticut. [Then] we realized that we wanted to go where people already were instead of build another site that we would have to attract people to. How did we come full circle to include it back in? We talked about how the message can potentially get out of your hands and out of your control and that would be something we would have to be prepared for. If we had a Wiki or microsite there [would be] a source of credible information. We knew that maybe everybody wouldn’t go to it, but that would be a resource out there. The idea for what we could include and how we could make it participatory kept growing and growing and growing.

As part of this initiative, you are going to be offering free social media training to nonprofits. Can you talk a little more about how that will work?
The Society for New Communications Research [tends] to like a hands-on social media approach where we can sit people in front of computers. I personally have attended social media trainings that were more conceptual and people left having a hard time figuring out how they logistically were going to be able to use the tools, also how to really apply them to advance their own work. I think you just have to get people online. It’s going to be a very hands-on training. We have several different audiences in mind. We include the Connecticut Health Foundation as an audience for social media training. We feel like we need to start at home, and there is a lot for our organization to learn because we are new to this. We have a network of 100 leadership fellows that we have developed over the last five years. We know that most of them are on Facebook and LinkedIn, but that is about it when it comes to their social media participation. We want to get them trained. Then we want to start opening the training up to our wider network of grantees and partners, especially the health advocacy organizations in Connecticut. Most of them don’t seem to be very active in social media. If we could just get them to do online what they do offline that would be great. We think it would raise their visibility as well as enable them to participate in our overall initiative. Many foundations offer training and technical assistance occasionally to their grantees as an organizational capacity building activity and for us it falls in that category.

I know you have some concerns about possible negative comments and interactions given the sensitivity of this issue. I’m wondering what you have built into the system to cope with that?
We’re concerned because we have followed other online conversations that deal with race. I think the issue can be a loaded issue. What have we done to prepare ourselves? The microsite is a way for us to have a little bit of control over some messages and some factual resources. I think the foundation [would like] the conversation to be advanced by the science and the research more than it is going to be. While we would love everybody to read the Institute of Medicine’s report on unequal treatment, intellectually we can rationalize that that is not going to happen. I think we’re just trying to discipline ourselves to sit on our hands a little bit and hope that we can build a network and an online community that will self police—that will establish its own norms and culture where some of that can be quelled or at least alternative perspectives will be shared. We’ve [also] asked our grantee to look out for themes. For example, there is a big perception out there that racial and ethnic health disparities are really a problem of poverty and an issue for poor people, not understanding that it spans the socio-economic spectrum. If we see patterns like this come up, we can build into our initiative ways to expand understanding.

The initial effort over the first year is about generating conversation and strengthening and expanding the network. Are you thinking beyond that or do you want to see how the initial efforts go and work out the latter phases based on the initial efforts?
After we learn how to have these conversations and to use social media tools to bolster participation both online and offline from key constituents, I’d like to do a number of interesting things. I personally am very inspired by the newer model of grantmaking where you use online communities to help refine grant concepts and where the community can then help select who gets funded. It first came to my attention through Ashoka’s Changemakers model, but now when I turn on the television I see on MTV that Pepsi is doing a similar type thing where they are inciting Pepsi drinkers to go online and vote for innovative ideas that potentially have some social benefit. That might be an interesting way to inspire conversation and new ideas that could eventually become successful grant programs. There are a lot of different directions we could take it in. We definitely want to move people toward action and different ways to express public will by influencing leaders, policy makers, putting pressure on systems and institutions, getting support and advocacy from people in their various communities. We don’t have that mapped out, yet, but that is the larger vision.

How are you going to know if you are successful with this initiative? Have you thought through yet what kind of metrics you are going to have in place?
[Measurement guru] Katie Paine [of KDPaine & Partners] is on the Society for New Communications Research team and she has developed some metrics for the initiative. I think those are important for us, but the foundation is connecting this with its overarching strategy of building public will [and] will want to look beyond [those as well]. We [also] have hired the Innovation Network out of Washington to measure all of our public will investments. They are in the process of trying to create a framework and theory of change that incorporates our social media objectives and unites them with some of our other strategies in creating public will. What we’re learning with public will building evaluation is that things don’t unfold in a predictable course as they can with programs and program evaluation. We’re trying to use it more formatively, and to use what we are learning to help us to refine our strategies moving forward. We keep having to remind ourselves that our objective is to create public will to eliminate health disparities. We tend to sometimes go a little too far out into the long-term outcomes and indicators. We think about looking at changes in health status for populations of color, but really if our objective is to create public will around the issue, we try to remind ourselves that what we need to be looking at is, “Are the foundation’s investments in the social media initiative really helping to create that conversation – to create the awareness, the engagement, the action.” If we can do that then we will have fulfilled what we set out to do.

We’ll be checking back with Elizabeth in the months ahead to see how her initiative is progressing. How about you? Any advice to offer Elizabeth? Any lessons learned from similar work you are doing?

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  1. #1 by Suzanne Daly on April 16, 2010 - 12:35 pm

    I think this is really wonderful. I am a second-year doctoral student in the School of Nursing at UNC-Chapel Hill and my area of interest is disparities in quality of health care. I am in a seminar course right now and we talk every week about the need for more public interest in disparities and the lack of public will to support efforts to eliminate disparities. Many people do not understand that disparities in health care hurt not only those who are directly affected by poor quality, but also every one who receives health care. There is also a tremendous financial impact on our country. However, these messages are hard to get out and difficult to frame so that people who are not directly impacted understand the importance of the issue of disparities.

    I think Elizabeth is also right on about the need to control the message – at least as much as they can. That is another thing we talk about in my seminar is the need to frame the message and that those of us in the world of disparities research have not done a very good job of controlling/framing the message.

    This is a really intriguing idea and so necessary. This type of effort can really help foster multidisciplinary collaboration as well as increase public interest/will. I will be keeping up with this effort!

    • #2 by Larry Blumenthal on April 18, 2010 - 10:27 am

      Glad you found this useful, Suzanne. Stay tuned for updates as Elizabeth progresses with her work.

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