Q&A: For Lygeia Ricciardi patient engagement is personal
In May 2012 Lygeia Ricciardi became the first director of the ONC’s Office of Consumer e-Health, which evolved out of the Office of Policy and Planning as CMS and HHS leaders started realizing the central role of individuals in the grand scheme of American healthcare and its reform.
Ricciardi’s office acts as a sort of consumer voice in ONC policy-making and tries to help HIT policy stakeholders thinking about mobile health and health IT from a patient’s perspective. Another part of the work is trying to help patients understand their legal personal information rights and the benefits of managing their own data via apps like the Blue Button.
With consumer technologies becoming more affordable at a time when 30 million Americans are getting newly insured, Ricciardi and other federal health officials see a good opportunity to try to align the patient empowerment goals of the Affordable Care Act with the new care delivery and management possibilities offered by health IT.
Ricciardi herself brings a range of health and tech experiences to ONC’s endeavors, as former interactive web designer, a former policy analyst for the Federal Communications working on telehealth policy and a mother of two daughters.
Associate Editor Anthony Brino spoke with Ricciardi at the HIMSS Government Health IT Conference here about the Office of Consumer eHealth’s role in HIT policy, the importance of public education on information exchange, and her experience navigating pregnancy care with a smartphone.
Q: So the Office of Consumer e-Health just turned one this past May. What have you been working on?
A: It just turned one. I think it’s exciting. ONC has a real understanding of the importance of consumer engagement. When ONC was originally created and even when HITECH passed, there was a lot of emphasis on providers and hospitals and their role in adopting electronic health records and using them meaningfully. But it’s only in more recent years that it’s become more generally understood that patients and consumers play a critical role, too. It’s about using information technology to empower and enable consumers and patients to be better and fuller partners in their healthcare; we really work across a range of different areas, and we work really closely with pretty much every office of ONC — for example, with the people putting out the regs on meaningful use. The stage 2 requirements that patients be able to view, download and transmit their data is huge. It wasn’t that the Office [of Consumer eHealth] was saying necessarily, ‘Hey, this is how things should look.’ But saying, ‘Hey, let’s include a broader swath of consumers, both activists and direct patients, in the process of shaping these requirements.’
Q: Coming from outside HHS, from the FCC, the Markle Foundation and also Harvard Business School, did you think HHS policy wasn’t doing enough in consumer engagement?
A: Yes. When I was working on consulting prior to this, that was the whole area I focused on. When I saw that ONC was interested in hiring someone to work in the space, I thought it was an opportunity to work with folks who are shaping nationwide policy and to integrate this idea. ONC is a great place to work, because it really encourages this sort of entrepreneurial thinking. Instead of saying, ‘This is how things have always been done,’ it’s open to new ideas and collaboration across different areas. Use of social media is one example. Generally, we believe that we are going to learn the most from people outside the organization. We work for the public, and we are very much interested in figuring out new ways, as well as time-tested ones, to get input from a wide variety of stakeholders.
I think it’s easy to forget as we think about doctors and hospitals and payment systems and so on that a lot of outcomes — and not to mention prevention — are really dependent on what each of us individually does everyday. A lot of it is the really simple decisions. Am I going to exercise? What am I going to eat? Am I managing stress and sleeping or those kinds of things. But certainly it’s particularly important for people who are managing a chronic condition, or even an acute condition. When we do have an episode of more acute need to interact with the healthcare system, we’re the ones as patients and family members to decide this is when I’m going to seek care or not. This is where I’m going to seek care or not. And if a given provider gives us a directive to do something, it’s not a given that we’ll do it. We choose to do it or not.
Q: There’s a range of public opinion on digital health and personal health information, from those worried about the security of any digital information to those wondering why doctors aren’t already emailing. Is there more work to be done in helping the public understand how health data is used and what their personal options are?
A: I think it’s really important to help people understand how important it is for providers to get a full picture of you and your health, and understand why that matters. I also think there’s a huge amount of promise in the Blue Button approach that says, ‘I as a consumer am the one who ultimately makes the decision. If I download my data, I chose who I want to share it with.’ And we have, as you say, diverse perspectives in the population, and people have different priorities. Some recent research data shows that a lot of Americans are extremely concerned about privacy. For others, privacy is less of a concern and they want convenience. So we should enable people to use Gmail, if they choose to. I think there’s a lot of work to be done in communicating to people in the first place that, number one, your health information doesn’t follow you right now. A lot of people go into a doctor’s office and they see a computer monitor and they think, ‘Aha, my health record must be on there,’ when really it’s used primarily for billing or administrative purposes. So we have convey: that’s not happening now and here’s why it’s important, because without the full picture you may be at risk; your provider doesn’t know fully what’s going on with you.
Q: In addition to working on policies to improve the consumer healthcare experience, you also recently had a second child. What was it like navigating maternity care?
A: I have a couple of kids: Leila and Ada. I did a lot of research particularly with the second child about how very often interventions of one sort or another can kind of cascade into more and more interventions. So you start off maybe with an epidural and then it turns out you’re not able to walk around, because you need to be monitored, and it’s more likely that you’re going to have a C-section or other interventions. My desire was really with both kids to have as natural a birth as possible, but to do that in a hospital setting in case some emergency came up. I tried to do that. I worked with a doula. I did a lot of prenatal yoga, and all those kinds of things. But what was interesting was that I actually found it really hard to mix the hospital setting and this desire for a more natural birth. My doula really encouraged me to stay out of the hospital until the last second, because her experience in helping to deliver a lot of babies was that once you walk in the door, you’re pressured to go through with this cascading slide of interventions. So as a result I ended up very nearly having a baby in the car — I mean really close to almost having a baby in the car. It was not ideal, but she was born in the hospital, and everything was fine, by a rather surprised medical technician who happened to be in the room and actually caught the child. But I should add as a kind of an unfortunate coda, that the OB-GYN who was supposed to deliver the baby and the doula, you know, were at odds with one another and refused to work together ever again, because this kind of conflict keeps coming up. So I wish and I hope that medicine can move toward a more holistic, patient-centered approach in which people like me can make their own choices about, say, having a more natural birth, but others, too, are more empowered to take a path that meets with their own goals.
I fall kind of perfectly into one of the demographic groups that’s going to benefit immensely from consumer engagement with health IT, in that I have a couple of kids and an extended family, and tend to play a major role in organizing care — taking somebody to the doctor to get their shots, or the emergency room occasionally. I do have personal health records for both of my kids as well as myself. I could not remember myself: ‘What are the medications that this child is allergic to, or when did that procedure happen, or what’s the name of the doctor who helped reset her arm?’ I want to know that stuff, and I don’t want to be reliant on a doctor to tell me. I like to be able to pull that out myself, if I’m travelling, if a certain providers goes out of business.
Q: Did you use pregnancy apps or did you survey the offerings?
A: I did. I used some basic apps to track ‘Where are you in your pregnancy, what’s happening now and is there anything specific you should be doing?’ But I actually used an app that tracked contractions, so I knew when I was going into labor, and I emailed that to my doula. ‘Hey, does it look like we’re in labor? Should we be taking action at this point?’ But then also after the baby was born, I used apps to kind of monitor how much she was eating, how many diapers I changed — which is critical in the first few weeks. This was really simple — essentially a timer. Like boom: contraction, start, stop. And then it maps it for you, and shows you. The old fashioned method, I guess, of tracking your contractions is just to sit there with a pencil and write down when they start and when they stop. But somebody’s got to be sitting there doing the math, counting how far apart they are and how often they’re happening — and while in labor, that’s not really what I want to be doing.
Q: Health apps are fast evolving, especially in diagnostics. What kind of role do see for your office and the ONC in mobile health policy?
A: More directly it falls under the FDA. We’re certainly interested at ONC, both in my office and in others as well, in being part of those discussions about how apps and tools are regulated. There are a lot of opportunities certainly in the diagnostic area. But I actually think that more of a low-hanging fruit area, if you will, is just about managing behavior today. Being able to potentially diagnose problems and communicate with your provider about them is terrific, but again I think we need even more particularly in helping people remember to take medications and track other behaviors, like how active they are. How much are they walking? A simple electronic wireless scale can help you keep tabs on your weight over time, which is important not just from an exercise perspective. If you’re taking on a lot of weight, it may be an indication that you’re retaining liquids, if you’re a COPD patient.
I think we share a philosophy with the FDA to encourage innovation and not slow down an industry that’s being created, and at the same time give some guidance and assurance to consumers. One effort we’ve made, an approach that ONC has taken, is the development of a model privacy notice that’s kind of like a nutrition label for personal health records that can help consumers compare one product to another, with regard to privacy and the use of personal health information. I think models that are not strictly regulatory can be used to augment the regulatory requirements that the FDA puts out.