Health care and frustration — often synonymous terms at times. One of the many contributors to this is the communication problem in health care. To put it bluntly, the health care industry is horrible at communicating. At this point, I expect a ton of health communication experts to be screaming at their computer screen that I am an idiot and am completely wrong. So, if this is you, take a breath and give me a second to explain myself.

As someone who has been trying to improve the health care system for nearly 10 years, what I have found is that the health care industry sucks at communicating because the:

Information available is limited;

Information is misleading; or

Information is too complex for anyone without an MD to understand.

Additionally, when people are looking for health information it isn’t usually under the best circumstances, i.e. they or someone they care about has a health condition that needs treatment — making user experience all the more important.

This is nothing new. And how many times have you been on the phone with your mother only to hear that she Googled symptoms and that she now has some ridiculously rare disease like Lymphangioleiomyomatosis (LAM), even though she isn’t of childbearing age (requirement of LAM) and that only 2,000 women in the world are known to have LAM today.

But self misdiagnosis is hardly the largest problem with it comes to health care communication. The real problem is when we start looking for information to make important health decisions — like which health provider to go to.

We are still making health care decisions based off of anecdotal information.

I did a little experiment on a recent trip to Washington, DC and NYC. I asked almost everyone I spoke to — from friends to cab drivers — how they found their doctor. Ninety percent of the answers were “Referral from a friend” — which is the case for the larger universe of people looking for a doctor. But the question here is how do you know if that doctor or hospital is actually good? It’s funny, you may trust your friend to give you the name of a doctor who is responsible for your life but not trust them enough to lend them your StarFox 64 (you know who you are).

So why is this? Well the main reason, is because of the way the system was built. Since the beginning of medicine, word-of-mouth and anecdotes have been the most easily accessible form of data when it came to health care; before Google, there was ask your parents/friends.

But now we have the internet, which opens up data and data connectedness to levels that were totally unimaginable. But even with advancements in how we communicate and learn, we are still relying on word of mouth to make important health care decisions. Even applications like healthgrades and ZocDoc, that provide aggregated data on physician performance, are still based off anecdotal experience. And don’t get me wrong, this is a good start, an n = 10 is better than an n = 1, with n = patient reviews. (I’m not going to even address provider to provider referral, which is just as flawed. There is a good article on MobCon, that you can read here, if you want to get into that).

And when it comes to larger health providers, users have access to more quantifiable data. While ZocDoc focuses on physicians only, healthgrades provides information on hospital quality. Healthgrades allows a user to first select a physician and then look at the quality of the facility the doctor is operating in — which is good — the more information that is available, the more informed decisions users will make.

Screen shot of healthgrades.com

For example, based on the information I have found on healthgrades, I am not going to go to this hospital for a Coronary Artery Bypass Graft (CABG) Surgery because the hospital has worse than expected results at a 4.55% mortality rate, compared to the predicted 1.74% mortally rate.

While we are at a point where we have data readily available to help people make more informed health care decisions, has behavior changed when selecting a health care provider?

This is the real question. At this point, unfortunately I think the answer is still no and there are a number of barriers that need to be addressed to catalyze this change, with the main one being the way health care providers communicate.

The current ways providers communicate, i.e. through their website, just isn’t all that great.

We’ve already established that a person looking for a health care provider is typically going to ask a family member/friend, and if they get further than that they are probably going to look at their insurance to see who is in network or just Google “doctors” and sort by geographic proximity. If the person decides to Google or view doctors in their insurance network online, they might go ahead an click on the provider’s website. And that’s what I want to focus on.

Health providers websites are horrible. Even great providers like the Cleveland Clinic and MedStar Health have websites that are terribly confusing and cumbersome for users. Like anything, there is a spectrum of quality.

Upper Valley Urgent Care Center Homepage

On one end of the spectrum, you have the truly terrible, like the Upper Valley Urgent Care Center — a local, stand-alone urgent care facility — whose website is outdated when it comes to design, but does offer some basic and helpful information. The two biggest issues (aside how visiting the homepage prompts the download of a .wmv file) are how the information is presented and found and the fact that there is virtually no information on the physicians. Like many provider websites, information is buried below too much navigation — this proves true for large and small providers alike.

MedStar Georgetown University Hospital Homepage

On the other side of the spectrum are the websites that are less horrible but still suffer from the navigation problem and give users 50+ ways to find information. The example I am going to use is MedStar Georgetown Hospital website, which does have two helpful features, the giant search box on the homepage and the four main navigation buttons — For Patients, For Physicians, Our Services, Our Hospital. Aside from that, users are hit with different navigation in the top header and more navigation in the left sidebar. There is a justifiable reason for this — there is a lot of information on this website, it has to be organized some how — but damn it is overwhelming. Information on the site ranges from parking information and directions, to services provided, to finding a physician, which includes some performance data via survey and star rating (although lots of smaller hospitals don’t include any info about patient physician experience) — all helpful info. But with all that information, one of the most impactful pieces of information is either buried or totally missing — and that is clinical quality data.

Clinical quality data are performance measures for hospitals, it’s the information I found using healthgrades. The MedStar website has some quality measure data posted under the organ transplant section, but aside from that, isn’t found anywhere else (at least I couldn’t find it). But just because it isn’t posted on the site doesn’t mean it doesn’t exist at all — where in fact, something like a much more common procedure like hip and knee replacements, would be helpful to to include on the site. The picture below shows the rate of complications for hip/knee replacement patients at MedStar Georgetown hospital and comes from the Centers for Medicare and Medicaid Services Hospital Compare Tool.

Centers for Medicare and Medicaid Hospital Compare Tool

And while it isn’t information that is going to make you shoot off fireworks in celebration, it is information that will help a consumer make a better health care decision; knowing that MedStar Georgetown Hospital’s rate of complications after hip and knee replacements are at the national average, is pretty helpful in knowing that they aren’t horrible at their job.

The dilemma we face when it comes down to information health care consumers would find useful, is that it isn’t on the site, and other potentially useless information has taken its spot.

But the other reason for omission is that it is intentional because it may not be in the health provider’s best interest to publish such data on their site. Health care consumer advocates have been shouting for inclusion of data like this for years and claim it is a transparency issue. And while I would like to see the incorporation of clinical data on a provider’s website, I don’t see this as a transparency issue but as a business issue.

By featuring clinical quality measures on their website, a provider can have an advantage over their competition and here’s why.

You really do provide good care. This hopefully is the case for most providers, and if it is, you should showcase the good work you do, even if it is equal to the national average. Many health providers incorporate language about their “commitment to quality health care” on their website or in their mission statement, yet provide nearly zero evidence of doing so. That’s what health consumers need to know, and if you are, you have a competitive advantage over other providers who don’t.

Early adopter advantage. If you are a health provider that is one of the first to include clinical measures on your site, users are going to assume that the other providers who don’t include quality data, don’t do so because they provide horrible care. By including data, you show the quality of care you provide while subvertly hurting your competition. And if your clinical measures suck, well you bought yourself time to improve before others catch on and post their measures.

You provide garbage care. Look, not everyone is an A student. There are health providers out there that just aren’t meeting standards and it is absolutely in their worst interest to include clinical measures on their website. It’s like a restaurant in New York City with a C grade; that scarlet letter is posted on their front door and is there to warn people that roaches run the kitchen and shame them into doing a better job. So there is going to be a portion of providers that shouldn’t include clinical measures on their site, but going back to point #2, if that is the case, and everyone else has clinical measures on their site, it is going to be assumed that you really are horrible. But by including clinical measures on your site, you can show how you aren’t “that bad”.

We get to a point where providers are including quality measures on their websites, now what?

Well, I would actually like to see the health care industry go a little further. With the wide scale adoption of electronic health records (granted interoperability still sucks, but I know a company fixing that: @MI7corp)why can’t we have clinical measures reporting from an individual physician?

Centers for Medicare and Medicaid Physician Compare Tool

Reporting already exists that populates the Physician Compare tool by the Centers for Medicare and Medicaid Services, but the information the tool provides is verification that a physician participates in reporting that is then aggregated and populates other databases. What I would like to see are individual clinical measures for a single physician, and then combine that data with the survey/anecdotal data that is already collected — to provide the closest thing to a comprehensive data picture of a physician’s performance.

But I don’t see that happening for a number of reasons, with politics being at the top of the list.

Since that isn’t likely to happen, I would like to see a larger distribution of the ZocDoc and healthgrades data on physicians. Currently, neither offers an API that providers can use. While I understand why — both sites want to drive traffic to their sites — I think greater utility of the data would come if the data were syndicated so providers could incorporate the information on their sites. While large providers like MedStar and Cleveland Clinic have their own surveys that provide context on doctor quality, smaller providers don’t — and this could be:

A new revenue stream for ZocDoc or healthgrades; and A way to improve health care decision making at a smaller provider level.

Ultimately, we need the health care industry to get to a place where consumers have more information on whether or not to go to a provider than they do about where to go to dinner — which currently isn’t the case and that’s just ridiculous.

Health care communications is in need of a major changes, starting with the way health care providers represent themselves online. They need:

Modern user-driven designed websites : Like government, health care is about 10 years behind when it comes to design. Good design can make all the difference between a user navigating through the website or quickly dismissing an organization. Users need to feel comfortable and not overwhelmed when going to a health provider’s website. Health care was already complicated without the Internet, a website should be there as a tool for users to simplify the process. Health care organizations need to understand user behavior and use it as a foundational piece driving design.

: Like government, health care is about 10 years behind when it comes to design. Good design can make all the difference between a user navigating through the website or quickly dismissing an organization. Users need to feel comfortable and not overwhelmed when going to a health provider’s website. Health care was already complicated without the Internet, a website should be there as a tool for users to simplify the process. Health care organizations need to understand user behavior and use it as a foundational piece driving design. Content that matters : This gets to the user experience. Who are your target audience? Patients and potential patients? What are they looking for? — Services, location, physician info and contact information. Health care organizations need to find the happy medium when it comes to the type and amount of content — and should embrace the importance of quality data — both anecdotal/survey-based and clinical quality measures. And once it’s decided what content is going to be included, try writing it in a way that is understandable and useful to users.

: This gets to the user experience. Who are your target audience? Patients and potential patients? What are they looking for? — Services, location, physician info and contact information. Health care organizations need to find the happy medium when it comes to the type and amount of content — and should embrace the importance of quality data — both anecdotal/survey-based and clinical quality measures. And once it’s decided what content is going to be included, try writing it in a way that is understandable and useful to users. Interactivity: Typical health care websites are flat, built to inform users. Let’s take the next step and create interactive tools, content syndication capabilities and other functionality that can transform the health care web experience from something boring and cumbersome to something interactive, helpful and interesting.

Lets get to a point where users have a better chance of picking the right physician than they do at picking the right person on Tinder. Let’s make the wrong health care decision right.