4 Questions for Regina Holliday, Patient Advocate

Regina Holliday, an advocate for data transparency and patients' rights, talks about open data as a means to better outcomes, and describes her biggest accomplishment so far.

Inspired by the death of her husband, artist Regina Holliday is a fierce advocate for patient rights, meaningful use of electronic health records, and for giving patients control over their personal health data. A painter and muralist, she founded the Walking Gallery of Healthcare, which focuses on the patient experience and data transparency in the American healthcare system.

Holliday spoke recently with HealthLeaders Media about her work and about her vision for the future of data transparency. This interview has been edited for length and clarity.

HealthLeaders Media: What have you been working on lately with regard to regulation and policy?

Regina Holliday: Meaningful Use (MU) stage two was in its comment period last spring. I and other advocates I know were outraged when CMS watered down legislation regarding the portal. [CMS] had originally stated [as a requirement] that in the 90-day reporting period, at least 5% of the patient population [would have] had to have viewed the portal and [CMS] wanted to change [from 5%] to one patient. Literally one. If one person in the entire care setting looked at their portal, it would fulfill the conditions.

I did a paint protest in response in front of Health and Human Services' offices. We painted [canvasses and jackets] in front of the building, all with the theme of data access. The aim of our efforts was to try to get people to comment on the legislation, and also to encourage those who make the final decisions consider the patient perspective. And, while security came out several times, they eventually realized we were harmless. We managed to not get kicked off the grounds.

In stage three of MU, we are pushing for more real-time data access, with the thresholds as high as they initially were going to be, but also to get more information into the portals. The deadline for comments was in late May. That's what I've been working on so far as legislation.

I'm also part of technical advisory panels where I represent patients' voices. Those panels are focused on hospice and acute care. That's not legislation, per se, but I'm working with organizations to prototype ways of care so they can be utilized as a model by folks like CMS.

HLM: What can data transparency do for improved patient outcomes?

Holliday: Right now, patients have very little access to their data, even with MU. You get discharge summaries, labs, you get a list of meds prescribed—that's just not very much information. With the Open Notes project, you, doctors, and nurses would be able to communicate through a completely open medical record.

For example, we never get to see if there's an error in our health records. If medical records were open, we could see the full picture of care—and we could amend it to clear up errors.

If you don't have access to your data, you just have verbal information given to you during your visit. A lot of people's ability to recall is not so good, and often they don't understand many of the words used in a healthcare setting. Most of us are brought up to avoid appearing stupid, so we'll smile and nod as the doctor or nurse talks to us, even if we don't understand what they're saying. And without access to the written record, we never will.

There are literacy concerns, but even those with a low literacy level very frequently have someone in their life—it could be a child, a spouse, a neighbor—that does have a high literacy level, and will help them to understand what the paperwork says—but they have to be able to access it.

Right now, it's very, very hard for patients to get access to this information, so it's difficult for them to make intelligent decisions about the future of their care.

HLM: How do you envision this greater transparency manifesting itself?

Holliday: I'm a big proponent of the Blue Button. I think it's a good idea to have a complete data download available to patients.

For patients with multiple providers, there might be as many as nine portals they need to visit to get all of their health information. No one has the big picture of what's going on in these patients' health lives. Having the patient be the endpoint of the data dump and their ability to transport it to something else which can crunch it all together is a good goal.

There's never been big data in healthcare before. All the data has been closeted and siloed. There's never been enough access to this data to make it worth it, but that's changing. Patients being able to get to that data and put it into an interface that makes sense, is user friendly, and has a complete picture of payers has wonderful potential to improve healthcare for virtually everyone.

I think the key technologies for giving patients power over their data include, of course, mobile tech and mobile-enabled devices. We have to make sure everything works on mobile interfaces. Many medical organizations are still more focused on desktop, but a lot of people don't have desktops computers anymore, and many users are going straight to mobile.

User experience design will be a big component of this. Many sites and portals are still very clunky, very 1990s. We've got to get into the current age and make it much more user-friendly.

I think we'll completely skip unique identifiers that are number-based in this country and go straight to visual [or] facial identification.

HLM: What would you consider to be your greatest accomplishment in advocacy so far?

Holliday: That would be MU stage one. When I first started advocating for data access, I didn't know what HITECH was—I didn't even know how to spell it. Twelve days after my husband died, I went to a federal meeting called CONNECT 2009.

I got to ask a question, which was about patient data access in electronic medical records. The speaker responded by telling me that patient data access was not the point of this legislation—the point was for doctors to talk to doctors and facilities to talk to facilities. I was floored.

A man named Fred Trotter came up to me and told me about the HITECH legislation, which he'd read front to back. There was a sentence in that thing that, if not cut, would achieve patient data access. So, we were trying to push forward patient data access as part of MU based on a little tiny clause within HITECH. And we did it!

On July 13, 2010, I was invited to be on stage at HHS for the announcement of MU to represent the patient voice. That day was the day the most powerful, because I felt it meant that the patient was truly being accepted at the table—and it's why I still fight. Because to be truly meaningful, patients have to be part of the voice.