This interview with Carol Cronin is the second in a series of brief chats between CFAH president and founder, Jessie Gruman, and health care experts - among them our CFAH Board of Trustees - who have devoted their careers to helping people find good health care and make the most of it.
Making Health Care Quality Information Useful
Gruman: You and your organization, the Informed Patient Institute, focus on how patients and caregivers view health care quality and how we use information about it for our decisions.' What's your impression of how the public approaches concerns about the quality of their care today?
Carol Cronin: Most people don't want to spend a lot of time dealing with health care because it's not fun.' When they're plunged into this world, most still assume that they don't need to worry about the quality of the care they receive, whether it is from a doctor, in a hospital or in a nursing home.' It's pretty frightening to realize that you do have to care about it, because it means you have to assume the burden. If quality does vary, you have to do the research.' This is hard to deal with when you are upset
People don't need this information until they need it.' And then they need it RIGHT AWAY.
Gruman: So they rush to their computer to find it?
Carol Cronin: Yes, they rush to the computer to learn about their condition.' But no, they don't look for quality information.' Studies of people's use of report cards that provide comparative quality of different hospitals and nursing homes show that they don't use them very much, even today
There is a growing body of information though that should both convince the public that quality of care really matters and that there is something they can do to ensure that their care ' and that of their loved ones ' is as good as possible
For years I have been imagining that we can convince people that the quality of the care they receive from different doctors, hospitals and nursing homes really matters.' If something bad happened in their care, would they then identify it as a quality or safety problem (instead of bad luck or their own fault, for example)? In fact, many people are beginning to notice that bad things do happen ' like getting the wrong drug or a hospital-acquired infection. Surveys have found that over 40% of those asked have either personally been in a situation where a medical mistake was made or saw it happen to a friend or relative.' And we're not talking about cold food or bad parking.
Gruman: It seems to me that there are some real barriers to us seeking out this kind of information.' One is, as you note, that we resist the idea that health care quality varies.
Carol Cronin: There are generational differences that matter here.' Research shows that the highest users of health information right now are older women. But people who have grown up with the Internet are going to have very different expectations about how to use and choose their health care as they start needing it more.' They're used to Yelp and Travelocity and Trip Adviser-type sources of information. There are some commercial doctor-rating sites out there now that resemble Yelp, for example.' But so far they aren't very reliable.' They depend on patient ratings and most physicians haven't accumulated enough ratings to be useful
This younger generation will go to the commercial sites unless higher-quality public and non-profit reporting sites figure out how to make themselves known.' Future patients will expect this information. Our challenge is to make sure that good information is out there.
Gruman: What are some of the challenges of improving the usefulness of quality information?
Carol Cronin: We've made some progress on this, but there's still much to do. The earliest report card efforts (pre-internet) were chart- and numbers-based.' In the mid-90s, the Internet made it possible to view complicated information in different ways and to dig deeper for details.' While the Internet has made quality information easier to use and more accessible, there is still a tendency to just transfer old presentation approaches to this new medium.
Important work is going on to change this, though.' Built on research by Shoshanna Sofaer and Judy Hibbard about how comparative information can be presented so that it is most useful to people, there is a focus on, for example, the development of composite measures.' Rather than looking at eight measures of the treatment of heart attacks ' many of which wouldn't mean much to the average person ' work is being done to combine them in such a way that they accurately represent the overall quality of heart care, making it easy for the user to know which is better at a glance.
Other improvements deal with how to present the information: showing the best performing organization first, offering the ability to sort based on performance, or using words like 'Best' or 'Worst' or other symbols to show differences.
I don't want to misrepresent the science required to do this: composite measures need to be science-based. But, this is the direction we need to go to make it useful.' Still, it's fair to say that in this field, we haven't done a good job with getting people to know about this information.
Gruman: What can be done to make comparable quality information more visible to us when we need it?
Carol Cronin: Rather than make people find a unique site, it's probably best to go to where people are already going and make sure the information is there. For example, when someone is diagnosed with diabetes, they probably head to the American Diabetes Association site and look at what diabetes is, how it is treated and how they will need to care for themselves.' It would be great to add to the standard diabetes explanations information about 'What is quality care for diabetes? Where can I get it ' what doctors, hospitals or clinics provide it?"
There are a few snags here, though: it is not clear yet who the public sees as the trusted sponsor for such information.' Nor is it clear what the incentives are for those trusted sites to make this information available.' There are few incentives for site sponsors to include comparative quality information on their sites. The advertisers/funders of the trusted sites are only interested in representing their own spin on quality, not their competitor's.
Gruman: You've laid out some formidable challenges here'
Carol Cronin: I'm optimistic.' A recent survey by Pew Internet and American Life found that 44 percent of Internet users have looked for information about doctors or other health professionals, and 35 percent have looked for information about hospitals.
Now it's true that we don't know what they are actually looking up about their doctors and hospitals ' it's possible that people are looking at doctors' and hospitals' own websites. But both doctors and hospitals now realize that patients are internet savvy. ' I maintain that if people knew comparative quality information was available, they would use it.
The trick is how to make this happen.
Gruman: You have started an organization that is working to figure out the trick. Tell me about the Informed Patient Institute (IPI).
Carol Cronin: IPI is an independent non-profit based in Maryland that provides access to credible online information about quality and patient safety for consumers, patients and families.
I started the IPI in 2007 with my colleague Marty Schneider.' We had started a magazine and website called Health Pages in the 90s to provide information about health care to the public and felt there was an opportunity to extend some of the work we did then.
Gruman: What work were you extending?
Carol: I have followed the field of health care quality rating and report cards for years.' In 2007, AARP funded me to go through every state in the country and systematically look for hospital, doctor and nursing home report cards.' This became the backbone of the IPI database which now contains almost a thousand report cards across many areas.' And we continually monitor for new quality reports and update links.
Our first idea was just to have a place where report cards were cataloged.' Then we decided to take one step further and evaluate the report cards against a set of criteria.' We tell people by state and type of report card which we think are better and why.' We review each report card annually using over 15 criteria. We assign a grade from A-F and write short-sentence reviews about what we like and don't like about the site.
Gruman: What else is on the site?
Carol Cronin: We then thought: 'Well, if people experience a medical error or quality problem in their care, how would they know what to do about it?'
This led us to develop tip sheets like 'What Do You Do if You Have a Concern about Quality?'
Gruman: I would have no idea how or where to report a medical error or quality problem outside the institution in which it occurred.' Does it differ depending on the setting or is there one place to report this kind of thing?
Carol Cronin: You're right: it varies, depending whether the problem is related to hospital care, nursing home care or the care of a physician.' It also varies by State. So far we have produced this kind of guidance for California, Maine, New York and Pennsylvania and are working on others.
The reporting information is presented in short Q & A format using plain language. ' But also offers some detail about what actually happens when such a report is made: what happens behind the scenes of health and licensing boards, what is the timeline and how often are people successful.
Gruman: What else does IPI do?
Carol Cronin: We track policies and laws around transparency and reporting ' this information is posted on our site. We did two reports last year.' One is a 'state of the art' overview of hospital and physician report cards.' The second one is in anticipation of Health Information Exchanges and answers the question, 'What should the new health insurance exchange websites look like to be useful to consumers?'
Gruman: How do you see the future of this field?
Carol Cronin: I think there will come a time when people routinely check on the quality of the health organizations and professionals they use.' We'll move from a 'trust completely' culture to a 'trust, but verify' one. ' IPI plans to give people access to the tools to help make that happen.