DONNA J. PETERSEN: Alright— here’s a question for you, and I’ll give you a chance to answer this in small groups in a minute, you might think I’m crazy, but it’s worth discussing a little bit, and the question is: Where do we start? Do we start with the data; do we start with the community? Now what does she mean by that? Well, we can, because we’ve got lots of data now, and we can be doing that in-house we can be analyzing data we can be generating reports, we can be linking datasets, we can be doing all of that, and we can then take that data out to our stakeholders, to our communities, and say ‘I really need you engaged in this process to help me understand these data’ or we can not do any of that and just go out and say ‘tell me what’s on your mind’. Tell me what you think is going on in these communities. And I ask this because I think it’s a really important question, it’s not something that I had thought about myself doing this, until I got involved in some folks doing this in other countries where they don’t have data like we have here, and they really don’t have any other option but to go out and then part of what they learn when they’re out there is what might we need to be monitoring, if we need to design some surveillance systems what might we do.
And it really struck me, we don’t collect everything that we possibly could or should. Some people think that we collect too much, other people might think we’re collecting the wrong things, so how do we learn what we’re missing if we don’t go out and ask? So the question is really about how much do you want to shape the process, I don’t want to put control here because there are some of us that are more comfortable if we can keep it reined in. If you present the data first, the downside is you might limit the possibilities that might come out of a more free open discussion. But, the good news is, you do get to clarify the parameters of what you’re willing to talk about and deal with. So there are some good reasons for doing that, saying ‘look, this is about what I can do and we want to keep the conversation within this world.’ But then you limit potentially new information, but on the other hand, if you go out and seek input from the community first, the real danger is that you raise expectations, that they think you’re actually going to do something about these things when you actually have no capability to do anything about these things.
The good news is that you might learn things that you might never have learned from the data systems that you have. It’s just something to think about and we’ll come back to that in a minute. And that really gets us to this notion of stakeholders. And I will argue that this is not a trivial issue either, that you really need to think about and figure out how you’re going to involve the people that care most about this process in this process from it’s inception all the way to it’s conclusion. Because what we do in public health is ultimately about the public. And it is ultimately very political. And if needs assessment is about change, and you’re going to be going to the legislature or you’re going to be making changes to your program there’s going to be people out there who are going too have something to say about that and if they don’t agree with your characterization of the community and it’s issues, they don’t agree with the solution you’ve come up with, you’re going to have a battle on your hands. And why do that to yourself when you don’t have to. Okay?
The other point here, and we’re not going to get into this much today
although I’d encourage you to talk amongst yourselves if you’ve
got ideas about this, is that regardless of where you start, if you go right
to the community, bring the data, you are going to have to present data, share
data with folks at some point in time, and not everyone is as familiar, as comfortable
looking at quantitative numbers and data and statistics as you are. You’re
trained, you use these things, you understand what they mean so you’re
really going to have to think about how you're going to present this information.
And you might have to present it differently to different audiences. The public
tends to prefer pictures, that’s easier for them to grasp. Do you read
USA Today? There’s always a little graph in the corner, how many people
eat pepperoni on their pizza, like I needed to know that, you can see that,
you immediately know what it says. If they gave me a data table, I’d need
to pour through and try to figure that out. If you do have to present tables
because there’s no way to pictorially graphically represent it, don’t
just give them the table, you’ve got to give them some interpretation
so they can see how you’ve drawn your conclusions.
You can present numbers, graphs, pictures, words. When we talk about public
input later, often the data we’re gathering are words, they aren’t
numbers. And so we can present those things.
Getting back to the Federal State Partnership and how the Bureau, as our agent
represents us to Congress, words are good. Words are good with Congress. Some
are more savvy and like numbers, others like words. When I worked in the Minnesota
Department of Health, I don’t even remember what the issue was, but something
came up out of nowhere that we weren’t anticipating, and there was this
big brew-ha-ha, the commissioner sent me back to the office to write up a, sort
of our position and I ran back and I typed and I ran back and handed it to her
and she looked at me and she said ‘Donna, it’s the legislature,
big crayon, big crayon’ and I had to drive back over in big fonts ‘we
want this, please give it to us.’ Not ‘here’s what the data
says, statistically, literature’.
I’m a technical kind of, I want to give them all the facts; they don’t want all the facts. They just want to know what the issue is. So think about that. Depending on the audience, how are you going to present this stuff? But also remember, you don’t always know who’s in your audience. You don’t want to be patronizing so it’s always useful, and I’ve made this mistake, you go somewhere, you don’t bring the source documents, you think nobody’s going to care, and there’s always someone in the audience who says ‘where are the p values for these numbers? I need to know the significance levels of this, you haven’t shown me the’ ‘Yeah it’s back at the office, I’ll mail it to you later.’ Don’t do this to yourself, bring the stuff with you, be prepared, but think about your audience.
I keep talking about stakeholders, who are stakeholders? Well, very simply, they’re anyone, any individual or someone that represents a group that has a particular interest in what it is you're doing. An interest in the process, an interest in the outcomes. This is about change; they want to know what you're up to. They have a stake in what it is you're doing. And because we’re talking about the entire population of women and children, and myriad potential threats to their heath, and many, many opportunities for you to take action, there’s a whole bunch of people out there that have a stake in what you're doing or what you potentially might do. Talking about change, people want to be a part of that discussion. Now, of course, people with a particular interest might find themselves in conflict, that’s something that you may have to deal with when you're managing these meetings, we’ll talk about that later if we want to.
So who are our stakeholders? Well, we know this. They include all those other
state agencies that we know we have to work with, they might even include programs
within our own agency, they’re often harder to work with than the ones
outside your agency. MCH doesn’t just happen within our little suite of
offices, it happens all over the place. So within our agency there might be
people we need to engage outside, Medicaid, Child Protection, education, all
those folks that are actively engaged in children’s welfare and the quality
of their lives.
Your local partners. Now I don’t know many of these states, but how many
of you have something like a local health department system? Maybe I should
ask who does not. Maine doesn’t, New Hampshire doesn’t, Vermont
doesn’t, Massachusetts doesn’t. Local health can be restaurant inspections,
rabies, dog catching, could be the police chief, used furniture salesman, I
think that’s probably true in many states, that not every community has
it’s own health department, right? But somehow, right, whether you’ve
got that structure or not, somehow, you’ve got to be relating locally,
right? That’s probably something you want to talk about.
Providers and facilities that serve this population. If you’ve been funding them, if they’ve been getting reimbursements from the Medicaid program, if they are the only tertiary center in the state, all kinds of issues here. I did some work a few years ago, where they had been funding, because of historical, you know, relationships and funding patterns, a large tertiary center, a huge portion of their block grant went to this tertiary center, and it was sort of, they got it, they didn’t have to do anything, they didn’t have to report, there was no accountability, it was really kind of maddening to them, and they had waited them out and they finally got a change in administration that was willing to go over there and say ‘no more’. Enough is enough. Well, you better believe they had a stake in that discussion, and on what basis do you believe you don’t need us anymore, ‘we did a needs assessment, and we’ve got this big state here, it’s like this big and all these people live over here, and we’ve got to be responsible for everybody and you're not doing that’ so this stuff can be helpful to you.
Professional organizations care about what you're doing. Whether they are physician organizations, nursing, dietetics, education organizations, people that care about what you do. Community based and advocacy organizations certainly care about what you do, and often can provide an important vehicle for you to get in to those communities and learn more about what is on the minds of some of these folks. People who fund you or who fund related services, because you're building systems. As I said, some of the systems that you identify might be to go tell someone that what they're doing needs to change. So they’re going to have a stake in what you do. Your clients, elected officials, certainly, your clients, the media, friend or foe media. And the public at large cares about what you do, to some extent. Tax dollars, values, we’ll get to that in a minute. Any and all, clergy, you know we talk about lots of different groups.
Why do I want to invest the energy it’s going to take to get these people on board with me, because it’s not an insignificant amount of work, it’s a huge amount of work. But there’s good reason to do it. One is, that your stakeholder group can really help you identify the full scope of needs, as we said before, our data systems only tell us what they tell us. We set up these data systems to tell us things that we thought we needed to know. There’s other things out there that we need to know that they don’t tell us. So they can help you identify a broader scope of needs.
Really important, helping you interpret the data that you have. Often times, you know, things look funny, things are changing, what’s going on out there, you know, what, help me understand what might be happening in this particular community. Or if you decide that you need to collect new information for this needs assessment, you need to do some primary data collection, we want to do a survey, we want to do focus groups, they can help you figure that out, what’s going to make sense, what’s the best way to get this information, because they’re out in the community, clearly helping you sort out priorities and if they're part of the process, it’s easier for you to defend it later. You don’t have to argue with them about it, they were part of the process in helping you do that. Helping you identify and select solutions that are acceptable to the public. They’ve got to be something you can do, they’ve got to work in some measure, something you, you can afford, but they’ve ultimately got to be acceptable. We’re going to work through that later in the afternoon.
Help build awareness for your program. A lot of us still struggle to be understood; we aren’t prenatal care and well-baby clinics anymore. We aren’t the people that go in and do the hearing and vision screening in the schools. We’re much more than that and that’s a hard message to get out to the public, you can’t put up a billboard that says ‘we’re here, building the infrastructure’ that doesn’t do things for people. But you get people engaged with you, and some of them can learn, some of them are teachable, some of them understand that there’s a lot more to what you do than the one thing they know you for. This is what public health struggles with. As we said earlier, public health is the restaurant inspector; it’s the dogcatcher. No understanding of the depth of what we do. If they know you as the guy that comes and checks out the sewage line or the septic tank, that’s what they know you as. If they run a business and you’re the blankety-blank so-and-so that comes and tells them they have to put in a hand-washing sink, that’s what they know you for. It’s hard to explain this to folks but if you engage different people and let them work through this process with you, it’s conceivable that they might actually grasp this and help you spread this message.
Help build consensus, don’t always get it but at least you can try. I was telling them in Atlanta when we had the health reform commission in the state of Minnesota, I know we passed sweeping health reform legislation then we needed a body to come up with the implementation plan. 33 member healthcare reform commission, they issued their final report, there were 32 minority reports attached to the report. They met the deadline, but consensus, no. Here’s where it really becomes important, in the end. In the end where you're actually going to do something with all of this information, you're actually going to change a program, develop a new program, go to the legislature and ask for some new authority. If they’re with you, if they’ve been with you all along, they can help you advocate for all of that.
They’re not there arguing with you, they're there with you. And a lot of us, today I can go to the legislature, tomorrow I’m told I can’t go to the legislature. Today I can answer the phone; people have told me they’re not even allowed to answer the phone. The rules keep changing on you. And you don’t want to be caught, you don’t want to say ’I can take care of that, I’ve got my data, I know what my needs are, I can carry this to the legislature’ then suddenly find that you can’t, and then where are you? If you’ve got this group of people behind you, they go carry that message for you; they are the public, that’s who the legislature responds to. And in general they can just support your overall efforts. Of course, the downside to all of this is if they don’t agree and you have big fights, but at least you’ve made the effort upfront ahead of time.
I keep talking about this, how can we do this? Well, one is your stakeholders can be a formal source of data for you as we said, you might not know everything from your data systems, you might need a group to bounce things off of, they can be a source of information for this process. We’ll talk about that a little later. You can assemble them in to some type of advisory committee structure. How many states have already something like an MCH advisory committee? Just a couple? New Jersey, New York, Pennsylvania, so you’ve already got something in place that can help do that, but if you don’t, for this process at least, it might be worth creating a little ad hock committee to help guide you through this process. And you can do that formally, you can do it informally. Or you might want to try to build some coalitions out there that then feed in to this process or to whom you bring the recommendations, there’s a lot of ways to do this. Steps along the way. Now, again, it’s not an insignificant amount of work, I know that, but it can really help you. To me, it’s worth the investment, it engages people in this process, it buys you an enormous amount of good will.
The hardest part of this, of course, is that you know who the enemy is, usually, and you know you’ve got to invite him to be on the committee, and you lie awake at night saying ‘what am I doing?’ But just doing that buys you enormous good will. Well, you care what these people think. You can address this opposition head on. ‘Come on, come on, I know we have our differences but I need you to be part of this process. I’m not going to sit here and just go through this whole thing and have you blast me out of the water, because I know you can do that’. We had a guy when I was in Minnesota, and you know these things, you go to the, legislature is very formal, they sit up there, you're here behind a wall almost, you can’t go back there, but this guy, he would leap over this thing and give them notes, who is that guy? Why can he do that? He derailed so many things we were trying to do, of course we finally figured out who he was and invited him in, you know, we don’t know, you must be unemployed because you're here all the time, come talk to us. And it really helps you legitimize the process. This isn’t something you're doing in secret.
You can, and some people do this, I’ve seen people have one, sort of one large umbrella advisory committee, they're the ones that you kind of bounce stuff off of, they’ve reviewed your recommendations and then you can have subcommittees off the advisory committee, so it allows you to have maybe one large committee, maybe 12, 15 people and then you can actually involve lots of other people in your subcommittees. You might have multiple advisory committees for different purposes. That’s another way to do it. Or you might not have anything formal, you just might convene people in an ad hoc way along the way, you know we’re bring people together, we need to discuss this issue, we really want your input. Ultimately, the more the better. Not in one big room. We’ve got an advisory committee in Alabama that has I think 65 people on it. Like, give me a break. Crowd control at these meetings. So, you might have the data committee. A lot of you folks here in this room are the epidemiologists, the data analysts, you might pull together people who are responsible for data systems in other agencies because you're really trying to make sure you maximize your data capacity, so that may be one committee, you know, your community leaders don’t want to hear all this stuff about data, but the data people don’t want to hear all the stuff about the committee so maybe you have a data committee.
Maybe you have a state agency partner committee. You know, you get the kind of the heads of the agencies because you want to make sure they’re part of this process. You might get your local folks together in a committee. You might get a community, you want March of Dimes, you want ARC, you want YWCA, you know, the groups that are actively engaged in the community, you might want to get them together. Or you might think about forming committees to address the various population groups that are our responsibility. You know you might have a group looking at women’s health issues, a group looking at children and adolescents, at children with special needs, different ways to cut this. Or you might go sort of, look at the various tasks along the way and say I’m going to get one group to really help me go through this data, to hash through it, to figure out what we know, what we don’t know, kind of define the universe of needs that we’re going to address here. Send them on their way, bring in a different group, to say alright, these are the needs we identified, help us make sense of them, what’s the priority we ought to do here.
The trouble with having the same group go through this is that people get vested so sometimes it’s worth breaking them up. Have a committee to set the advocacy agenda, have a committee to help you develop your performance measures and evaluation planning. You can look at a list like this and say ‘yeah, I can see where I’d want to have different people at those different steps’, so that might be a strategy you employ. And a lot of it you really have to consider what works within your agency, what’s the culture of your agency. I’ve worked with states where they say ‘oh, no, no, no, we don’t have any advisory committees, we’re not allowed to do that ‘ and you think how are you supposed to get your work done? I’ve seen that happen. Ok, well, we’re not going to call it that, we’re just going to have a workshop. I don’t know. Call it something you can call it, but you’ve got to get people in here and hear what they have to say.
UNIDENTIFIED SPEAKER: (Inaudible)
DONNA J. PETERSEN: Yes, I think the clients that use your services, family members, and again, your services can be a huge array of things that you provide, so tapping in to what do they think, what you are doing, does it make sense, the point was clearly that you might want to involve families who might not be part of advocacy groups, that are just simply people who understand what you do, at least at some measure.
Time for a break, get up, move around. We’re going to get you into groups, and I want you to talk amongst yourselves, how have you used stakeholders in the past, and I want you to think about a time when an advisory committee, and I use the term loosely, when a group of stakeholders was helpful to you in some way. They laughed in Atlanta, have we ever had that instance; they came up with a lot of good ideas about that. Think about when have they been helpful to you, and what were some of the characteristics of those groups. Then talk about an instance where it didn’t work, where it was counter productive, and if you can, what went wrong? What might you have done to avoid that problem? Because that’s the, you know, stakeholder groups can be wonderful, they can be terrible. What we really want to talk about here is how to optimize the use of stakeholders, then, if you can think about, from your experience, back to that question a few moments ago, what do you think? Do you think you ought to get your data all together and go out that way? Or do you think maybe it’s better to go out and say ‘I need to hear what people think’. So how to use stakeholders positively, negatively, what do you think about this idea of community versus data. Select one amongst you to come up and report on what you think.