Q&A with Carol Cronin: Grading health care report cards

Editor's Note: Today, Center for Health Journalism Digital Contributing Editor and Antidote author William Heisel will be speaking at the Consumers Union Safe Patient Summit in Austin, Texas. Heisel will speak about "Diagnosing Doctors: Using Public Information for Accountability." He will be joined by Bob Oshel, a former senior program analyst and research director, Bureau of Health Professions, Health Resources and Services Administration. Heisel will walk attendees through his state-by-state tour of medical boards, showing people some of the big differences between the way states discipline doctors and how they keep the public informed. Look for an upcoming post about what he learned while there.

As the Executive Director of the Informed Patient Institute (IPI), Carol Cronin probably knows more about the nation's health care report cards than anyone else. A gerontologist by training and a graduate of the University of Southern California, Cronin helped launch IPI in 2007 to make sense of the vast array of rating systems out there on hospitals, nursing homes, doctors and the like.

Cronin was first director of the Center for Beneficiary Services at the Health Care Financing Administration (now the Centers for Medicare & Medicaid Services), where she launched, among other things, Medicare.gov. She has served as an advisor to other government agencies, as well as nonprofits and foundations. As I explained last week, the IPI site is a rich mine of information about health care report cards. Cronin's work has appeared all over the place, including About.com, the Santa Cruz Sentinel and the Agency for Healthcare Research and Quality's Talking Quality site.

I reached her at her office in Maryland. The first part of our interview is below. It has been edited for space and clarity.

Q: What prompted IPI's creation?

A: In the 1980s, you started to hear people like Don Berwick talk about the importance of regional variation in health, and it occurred to me that the missing component of a lot of this work was the patient. I became really interested in how to engage the public more in understanding issues related to quality and patient safety. Part of that has been a pretty deep dive into quality measurement and performance, and part of that has been looking at reporting.

Over time, because of my interests, I have collected information on the types of report cards available to the public. I have just kept bookmarking them over the years. And what specifically happened was that in the 1990s, I began to work with Marty Schneider, on something called Health Pages, which was one of the original efforts to bring community-specific comparative data to the public. It started as a magazine and migrated to the web. He and I had gone our separate ways, but we reunited a couple of years ago and started talking about how we could meet that need of creating information that helped patients make comparisons locally in an array of health areas.

That's when we decided to create IPI. We got some funding from AARP to do a project that involved going through every state and looking for report cards across a number of different topic areas. And we thought, "Why don't we evaluate them instead of just listing them? Let's tell people which ones we think are best and why."

Q: Who actually went through the report cards?

A: Marty and I did most of it. We're kind of a virtual nonprofit. We have no overhead. A lot of this has been a labor of love, more than anything. We are now getting some foundation funding for various aspects of what we have done.

Q: How did you decide what criteria to use when evaluating these report cards?

A: I've been tracking the whole field of how you evaluate information online. We created some preliminary criteria and then vetted them with people who work in this field of report cards and measurement and usability, because we are really talking about two things:  the content side and the usability side. I've been using our system now for a couple of years and as I go through more and more sites, it seems to work pretty well.

Q: As you have been going through the report cards, what has surprised you?

A: What's interesting to me is that, in some areas, there is pretty robust information. In the nursing home side, depending on your state, you can get pretty good information in a variety of areas. This includes information from surveys that the government collects, quality indicators, patient or family satisfaction in some cases and staffing levels. That's in contrast to the physician area where it's just pretty paltry. And when I say paltry, I really mean paltry because I have looked hard for anything that might give people meaningful information about the physicians in their area.

Q: What do you think accounts for the difference between what is available about nursing homes and what is available about doctors? Is it just because nursing homes are institutions and that there are fewer of them?

A: I do wonder why there is such a big difference. I think maybe because of the whole decision making around nursing homes and the notion of vulnerability and family involvement that there is more of an emphasis on providing information about quality there. Another area where you find a lot of information is in the area of organ transplantation. That has been very impressive. And another area is fertility clinics. So there are some pockets out there.

Q: With fertility clinics, though, the information can be deceptive because, unlike solid organ transplantation, where the organizations are required to report, fertility clinics are not required to report, and so you have some large fertility centers that don't report their data, which can skew the comparisons.

A: I didn't realize that. That's something we'll definitely have to look at. What impressed me was that the data can be quite granular. "Here's someone with my situation in terms of age, and here's what the chances are for me to get pregnant at this center." That, I thought, could potentially be very useful, as opposed to hospitals and doctors, where the granular information is not available, for the most part.

Q: When I was at the Orange County Register, we found it difficult to find good information about hospitals, too. How much do you think that the lack of information has to do with the power of the hospital lobby or the physician's lobby?

A: The lobbying power is definitely a factor, and it's particularly a factor on the physician side. There's been a real reluctance on the part of organized medicine to be measured and be reported on. It's fairly endemic. It translates beyond just organized medicine. I have had conversations with physicians in passing that I meet, and there's a real resistance to more reporting.

I always say, "How do I, as a patient, know you are a good doctor?"What I hear back is, "You have to trust that I am." But the data that I have seen about quality gaps between doctors is pretty startling and raises questions about why that trust should be there.

Q: You can find out more about your car mechanic in some states than you can about your doctor.

A: I think it's changing, though. The other side of what I do is helping people understand what they should do if they have a concern about quality. Say we are successful in getting a patient to understand that quality does vary. Then they are in a hospital or in a nursing home or in a doctor's office and see something happening to themselves or a loved one that may be a quality problem. What are they supposed to do with that information?

I found that nobody had answered that question in a comprehensive way. That led to the proposal to the California HealthCare Foundation to answer that question for nursing homes, hospitals and physician's offices. We've done this now in California and New York and have started the work in Maine and Pennsylvania.

What we have found is that patients or their families have many more options in a nursing home than in other areas. There is more opportunity for a resident to raise a challenge in a nursing home and to appeal a decision than in hospitals or physician's offices. My hope is to do a couple more states and be able to understand similarities and differences about the processes. Then I want to find someone who will fund it nationwide to determine what is best practice in terms of a (complaint) process from the perspective of a patient.

Q: Can you describe one pathway for a patient complaint?

A: There are a lot of people who are calling the department of health or the medical licensing board with complaints about the quality of nursing homes and hospitals and doctors. They go through this process which is multi-layered, particularly in the context of doctors, and very few of those initial complaints result in some of type of action being taken.

The positive spin I try to put on that is to the extent that more and more people do that, the more it will get people's attention. If you take the time to log a concern in multiple places, even if no action is taken on them in the context of a specific disciplinary action, it's still in the record. So, if in fact someone else calls again and there's some indication there has been a concern before with the same nursing home, hospital or doctor, then maybe that agency will connect the dots.

Q: From what you have seen, what is driving most of these calls?

A: People don't think they or a loved one received the care they think they should have. They also can be motivated by not wanting someone else to be hurt. But they usually stop with one call, which may not even be to the right agency.

Q: What do you recommend that people do?

A: First of all, you should try to resolve it internally. But if you are not happy and you feel you want to help other people avoid having the same thing happen, there are multiple places you can go. I would urge people to go to the Joint Commission, to the hospital to spark a peer review investigation, to the health insurance company, to the doctor's group, to the state nursing board.

But people need to set their expectations low. This is not easy stuff. I was amazed at how hard it is to complain about a physician, especially in the context of peer review. It is hard to prove that you received substandard care. And if you are denied at any point along the way, there is no appeal, unlike with nursing homes where there is an appeal process.

Q: Does the existence of an appeal process and the generally higher level of transparency for nursing homes grow from people being more worried about their parents or grandparents than they are about themselves? Is it just that it's easier, in some ways, to fight for someone else's rights?

A: I think another difference is that there have been horror stories about nursing homes for several years now. To a certain extent, there's this notion that they can be pretty scary, justified or not, and some of this just has to do with the fact that people are usually close to the end of their lives when they go to live in a nursing home.

When thinking about hospitals and doctors, the average person doesn't think of them as scary. They are pretty trusting, and, in most cases, they probably should be. I think it's very difficult for people to believe that the doctors and hospitals that they know don't produce high quality care. That's a very difficult cognitive task for people because they maybe gave birth there or had a procedure done there or have been seeing the same doctor their whole lives.

I am somewhat optimistic, though, that people who have been completely raised on the Internet and are used to this idea of comparative information available at their fingertips, particularly as they have babies, are going to demand more comparative information about their health care options.