Someone needs to save people from a largely terrible online experience.

Our grandparents grew up seeing a family doctor, who looked after them, their parents and siblings for most of their lives. As our grandparents hit late middle age, they were increasingly referred to specialists for every need beyond the basics. This was partly because their bodies started to break down, and partly because trends dictated the change.

In the 1970’s and 1980’s, the medical specialist was king. However, as costs to see a specialist skyrocketed, insurance companies stepped in and centralized care around the medical super-complex. By the 1990’s, the star quality of the specialist had been sublimated by the prestige of the medical complex brand: the Cleveland Clinic, Johns Hopkins Hospital, the University of California Medical Center. The big medical complex, presumably with its cutting-edge technology and fleet of elite specialists, became the holy grail for patients seeking comfort and answers. The suggested promise was that once a patient got inside the hospital, she’d be the recipient of the best medical advice and technology on offer. Technology, indeed.

Today, the introduction to this promise often starts online, on a website.

The Journal of Medical Internet Research reported in April 2015 that an estimated 74% of adults in the United States are online, with up to 80% of them looking for health-related information there. A 2013 Pew Research Center study reported: of those who have looked online for health information, 59% say they have gone online specifically to diagnose themselves or someone else. A full 77% of online health seekers say they began their last information seeking session at a search engine such as Google, Bing or Yahoo.

Clearly we are relying on the Internet, search engines and technology to help us learn more about health-related situations, as well as to diagnose ourselves or someone we are close to. We are relying on technology increasingly for this aspect of our lives, yet to visit any typical health care or hospital website, one could conclude these organizations aren’t the slightest bit concerned about their visitors' experiences. Acting as a consumer searching for a doctor, I clicked on “medical professionals” in one hospital site and was informed of continuing education programs for doctors and nurses. This was not at all what I wanted, and made me question who exactly was considering my concerns at this hospital. This would definitely impact my decision to pursue (or not to pursue) a relationship with this organization.

The ramifications may be almost subconscious to most website visitors, but trust me, they make a difference.

Designing with Empathy

Too often, hospital and health care websites are aimed inward, when they should be designed with the end user in mind. But the effort required to face outward to consumers requires intentionality. First off, it’s extremely helpful to try to put yourself into the shoes of the person likely to be experiencing the website, particularly as concerns their frame of mind when coming to the site for the first time. Imagine a family member, who has just learned their spouse has been diagnosed with Alzheimer’s disease. What might their path be on your website? Landing on the home page, looking for answers, the user in the case below is first told of your hospital ranking and then encouraged to download an 11-page, text-intensive ‘patient handbook.’ It would be entirely fair for them to bounce off your site at this very moment.

Similarly, consider the impression which is created when a section on Patient Stories is created, but not populated:

The text literally reads, “No success stories are currently available. Please check back soon.” Imagine any other service provider trying to generate revenue whilst publicly stating they have no stories of success with consumers to share, in a section of their website which they chose to create.

This is the opposite of intentionality in user experience.

It doesn’t inspire confidence, it seems careless, and that is the last thing you want to sense from a place you’re considering entrusting your life to.

In the next example, this local hospital appears to be so inwardly focused, the Services landing page takes the user to a grid of logos for the various practices offered at the hospital, organized by names which mean something only to the hospital itself. “Surgical Associates” doesn’t tell the prospective patient anything helpful at all. Same with the “Rowe Health Center.” That square doesn’t help the person searching for information about a specific affliction, unless he’s already deeply familiar with the hospital complex. How would he know whether the Rowe Health Center specializes in cardiac care, or bunion removal, without having to read the fine print underneath? This isn’t how patients search for information. This is how a hospital loses track of its audience:

Only when you put yourself in the shoes of an audience type can you really comprehend exactly what kind of impression is being made.

Today, research indicates that your website has only milliseconds to make a positive impression on a user. It’s likely a health care website has even less time, since that audience is experiencing extra stress and anxiety while they’re visiting the site.

Your website could very literally be slamming the door in a person’s face, exactly when they need the most help.

Understanding How the Internet Works

Many existing health care websites suffer from a myriad of issues — they’re organized in a confusing fashion and/or around a format organized according to what makes sense to the provider, not the end user; poor web development, which makes the site function poorly; lack of focus on user experience; no content strategy; not responsive to mobile technology; not accessible to visitors with disabilities. Most of those problems are also negatively impacting the search engine optimization of the site.

These factors mean the website may not even show up for a user’s search.

One of the first things any health care provider must address when considering their website, is, how are people getting here? Are they even getting here at all?

Also alarming is the fact that online users are often relying on the information they find to self-diagnose, which significantly impacts any follow-up visits with doctors or health professionals. The same Pew research study mentioned earlier found that only 53% of online diagnosers say they talked with a medical professional about what they found online, while 46% did not. This is concerning because there is no way to know whether these self-diagnosers were referencing reliable information, couldn’t get in to see a doctor, or believed false information about their situation.

Yesterday’s Patient is Today’s Consumer

Everyone gets sick and needs a doctor at some point, but the way patients find that doctor has changed dramatically, to the point of changing the very terms we use to describe them. Today’s “patient” is increasingly less patient than she used to be. She is also more self-directed and self-reliant, such that the term “patient,” meaning a person being taken care of by another, has evolved into the term “health care consumer,” which suggests an individual who takes care of herself.

Moreover, health care website users encompass very diverse groups, including people for whom English is a second language, elderly people who aren’t facile with computers, and people who don’t have their own computer, or are relying on a smart phone for all of their web access. It’s also worth mentioning that most health care consumers accessing a health care-related website are doing so under some sort of duress or stress.

This means they are more prone to confusion, lack of attention, frustration, anger and fear.

User-Focused Thinking At Work

Fastspot’s team is currently working to reimagine what Loma Linda University Health (LLUH) system’s website will be, from the ground up. A guiding tenet for our work has been to focus on the user experience, with the highest priority audience types being patients and their families. During our early strategy and concepting stages, we identified an area of the user experience that could be greatly enhanced to suit the needs of prioritized visitors.

The approach was to find ways to empower website visitors to “make good use” of the website.

In other words, what would they want to be doing with the content they were consuming? We identified several answers to this question. On one hand, they would want to be saving and organizing content that was specifically related to their needs. In other instances, they may want to share that collection of information with family or other physicians. And in every case, they needed this process to be incredibly easy and friendly, since we can assume they would be going through these processes under a higher level of stress or fear than normal.

This line of thinking resulted in a customized “gathering and sharing” utility that is baked into the entire user experience of the site. We knew we had to ensure basic information was easy to find and consistently presented, from information regarding where to park the car, to where to get a meal when you’re visiting a loved one. We are hopeful that these user-focused approaches will result in a much more positive and bonding experience between “consumers” and the health care provider, in this case Loma Linda University Health.

These may seem like small or obvious intentions, yet they are a very significant example of the way in which LLUH is allowing us to design with empathy for people in mind. The net result is a user experience which signals that LLUH actually cares about you and your health, by helping you keep information clear and organized during a very stressful time. This is a subtle, but very important point.

Captive Audiences Require Utility, Convenience and Trust

Unless health care providers design and maintain websites which become the central and most trusted digital authority for their patients’ and future patients’ health care needs, consumers will look elsewhere for help in managing the myriad of test results, notes from meetings with doctors, and images of scans — which are generated by the dozen during each week of a prolonged illness.

The goal of the health care provider should be to capture the patient’s mindshare and keep him within the networks of the parent institution, to provide better care and a more holistic approach to working with patients.

In order to do this, the health care provider must envelop the patient and his family in the content they need to manage their care and navigate what might be the most difficult time in their lives.

This is a critical element in the effort to fix the health care system as a whole. As discussed by Michael E. Porter and Thomas H. Lee, MD in The Harvard Business Review article, “The Strategy That Will Fix Health Care,” the effort needs to be focused on value. Providing the best service, for the least negative impact. As health care systems strive to implement new strategies to better serve their customers, the experiences those customers have via the website interfaces must be considered. Additionally, the health care system must find ways to convey this new and improved “value” to future patients.

While MyChart, a system utilized by Johns Hopkins Medicine, leaves much to be desired when it comes to overall design and aesthetics, it works quite well to form a helpful and easy-to-use connection between patient and health care provider. As a user myself, I find the ability to communicate with my doctors via the integrated email system a big convenience. I also appreciate being able to review past lab results and medical information in one online location. This is a motivating factor for me to stay within the Johns Hopkins system for my future health care needs.

Whether you are technologically challenged, busy, or simply dealing with a stressful medical situation, having an easy-to-use online resource to facilitate your entire process through a health care system is incredibly important.

Most of the effort, time and money which health care systems spend on technology has clearly and appropriately gone into supporting medical advancements which benefit the patient once they’re in the system. Yet what about the systems which act as both a gateway to and a pathway through their treatment? And what about the systems required to maintain that relationship over the long term?

In our grandparents’ day, they could count on being looked after by the same doctor throughout an illness, and that doctor was the single point of contact for the patient and his family. Families patiently waited for the doctor to call back, and a certain delay and information gap was expected.

Today, in an era where we turn to Google for instant answers to pretty much anything; whether it’s the names of the original thirteen British colonies in America, or the street address of our favorite restaurant, we still struggle to get definitive, timely answers about crucial details pertaining to our health care.

We are overdue in acknowledging the huge communication gap which exists for health care consumers, and we need to address it.

The Path to Answers

Here’s a simulation of how an educated, intelligent patient or concerned family member or friend of a patient would interact with the Internet to obtain help after a diagnosis at the primary care level. This is likely a best case scenario:

  • Search Google.
  • Search the disease on Web MD.
  • Check the website of the most reputable hospital in the area.
  • Within that website, check the page which pertains to the patient’s disease.
  • Find a doctor or specialist in the area, perhaps at the local hospital.
  • Evaluate the doctor’s profile.
  • Evaluate the doctor’s ratings and reviews on sites like Schedule a second opinion with a specialist, probably by phone.
  • Read links to medical journals, with limited success in understanding them.
  • Read comment threads from other patients, most of which are too specific to their situation to be helpful to the reader.
  • Arrive at the doctor’s office with many more questions as a result of the research.
  • With limited time for the visit, leave the appointment with still more questions than answers.
  • Return online to seek out videos of the recommended procedure, or more information on the physician who will be treating the patient.

How to Know Whom to Trust?

Essentially, the current path to knowledge for health care consumers leads to four different strata of information: information from their primary doctor (vague), generic information from the Internet (overwhelming), detailed medical journal information (complicated), and individual comments posted from family members (subjective). None of this is ideal.

In the initial phase of interacting with the medical community through the Internet, the patient and loved ones are just trying to determine the trustworthy voices in the field.

They’re constantly trying to balance what various doctors, nurses, third-party experts and other people say, which often contradict one another. Once ‘in the system’ at a particular medical complex, the family has access to the patient portal, but that can be pretty limiting and frustrating, too. Often that’s where test results are delivered to the patient, but then she’s left trying to interpret them on her own, until the doctor can be reached. Some doctors communicate exclusively through the patient portal, which is problematic for users who are used to live interaction or who aren’t facile with computers.

A July 2015 article by the Agency for Healthcare Research and Quality (AHRQ) noted:

“…the sheer volume often makes information on the Internet overwhelming, hard to navigate, and hard to validate. A search for health information can bring up thousands of sites. It is also hard for people to know whether a source of information is trustworthy. A Pew survey found that many seekers of health information on the Internet do not follow recommended guidelines for checking the reliability and timeliness of information: half reported that they check the date and source of information only occasionally, hardly ever, or never.”

This drives home the point that health care providers and organizations are obligated to provide resources to their website’s visitors — even if they are sending them to outside sources. It is not enough to leave users to fend for themselves on the Internet if the health care provider itself can’t provide the necessary information or access.

Despite the clear need for expert guidance for health care consumers, virtually none of the medical centers in America today are doing this. According to the article, some providers express concerns about legal and liability issues. Many organizations claim they’re uncertain of this strategy because some patients might not have access to the Internet. Neither of these are good excuses for shirking the responsibility.

Compounding matters, the hospital website is completely disconnected from the patient portal, billing system, and so on. If I could make a case for overhauling an aspect of the patient experience online, besides the case I’ve made for the need to re-design with the end user in mind, it would be to overhaul the myriad of portals a patient needs to visit to service all their health care needs, including paying bills and dealing with insurance companies.

Billing Woes (Tangent Alert)

It’s bad enough receiving a massive medical bill. Worse is the fact that typically, a patient and her family receive three sets of bills; the doctor’s bill, the hospital fee, and the lab bill. Compounding the problem, the patient often has to go to three different online portals to pay them. Sometimes, distinct parts of the same practice are using different medical records systems that don’t connect or interact with each other. Sometimes it’s completely unclear what has already been paid by the insurance company, which payments are pending from the insurance company and what in fact the patient actually owes.

Many patients will put off paying a bill until a letter from the collection agency arrives. Only then do they know how much money they actually owe.

This isn’t user-friendly or efficient for either side. We ought to be able to do better.

The genesis of the problem lies in the fact the process of automating digital records grew rapidly due to government regulation and the threat of fines for providers who hadn’t automated their systems. The system wasn’t engineered with smart phones in mind, it wasn’t built with doctors and nurses in mind, and it doesn’t accommodate the natural margin of error which occurs when busy doctors and nurses don’t enter the right codes. Billing codes are based on what a doctor or nurse puts in her treatment notes. In fact, if a doctor submits the wrong code, she can be investigated for fraud. Insurance companies have a vested interest in making sure doctors don’t order more tests or complicated procedures than is absolutely necessary. Hospitals are regularly audited by government overseers, which in turn has created a new layer of costs to administering health care. Worse, there are just a few large players in the digital records space, who have successfully limited the ability of startups to make change.

Compounding the stress of being ill, the patient’s financial fate is in the hands of a struggle between the insurance company and the health care provider, once a medical service has been provided.

The difference between success and failure for the patient, in terms of getting his bills paid, sometimes boils down to which and whether the right codes were entered into the electronic medical record and billing system, two entities totally disconnected from him. We should be advocating for what makes life easier for patients. A dedicated section, accessed through the hospital website, where he can take care of his bills from any service provider connected to his treatment at the medical center, would make a world of difference.

Within this section, we could also include a central repository for notes, and a place the treating physicians and staff can come together online to get consensus on treatment, or at the very least, leave data for one another and the patient to see. Some doctors still write notes by hand, leaving their thoughts and input awkwardly inaccessible to other treating doctors and patients alike. The traditional, increasingly elusive, in-hospital “family meeting,” where multiple specialists, doctors, nurses and other caregivers meet with the family to discuss the comprehensive treatment plan, could also be done in a virtual manner, with family and caregivers connecting live, on a digital conference platform. These are just a few examples.

The point is, we need an overhaul of what we’re offering our fellow humans in the health care space.

Who Is Making Progress?

The technology we embrace for breakthrough medications and treatments should also be directed at the communication systems between those who are in the business of helping people, and those who need it. One look at how doctors and hospitals interact with their customers (patients) online and it’s clear that we have a wide breach to fill. We need some form of a nicely balanced, curated source of information which covers the duration of going through medical treatment. Patients and loved ones need something that’s easier to understand than a medical journal, but informative enough that it doesn’t leave them with more questions.

We need to heuristically analyze the content on health care and hospital websites.

This involves acting as a consumer would, when searching for information on a particular disease or problem, or information on where to park at the hospital, or which doctor best meets his needs.

The content on many health care websites is lagging behind almost every other service provider which the patient — now called consumer — encounters.

If we examine how other industries are tackling this issue, the world of higher education shares many of the same challenges, yet they are making positive advances. If you look at the University of San Francisco’s home page (full disclosure: this is a project my agency worked on), you’ll see a well-choreographed approach to welcoming a wide variety of users.

Universities and health care organizations share many of the same issues, from trying to speak to a wide variety of audiences, to needing to convey a lot of information, some of it highly technical and intimidating. They both must address users who are increasingly using mobile devices to access their online information, may not speak or read English, are visiting the site multiple times for various needs, and often need assistance in making their way through the complex engagement process. And they’re both in the business of providing a service to their customers:

The site is clear, inviting, and focused on meeting the needs of the end user. The navigation is intentionally simple and direct, while secondary navigation reaches out to specific audiences. At all times, the ‘unknown’ visitor is given the most consideration — as in, the visitor who knows the least about USF.

A few sites do a decent job of summarizing their research in simplified articles on their own sites, but it’s clear this time-consuming work is under-appreciated and under-resourced. Yet, it’s so important to the end user. Here’s the homepage to Mayo Clinic’s research magazine, the only original research content of its kind I found published for consumers on the web.

As reported by the Agency for Healthcare Research and Quality in 2015:

"Many health care consumers seek information about specific complaints, conditions or diseases, drugs, nutrition, and fitness. For these people, getting information quickly is a large component of “getting care quickly.”

Where To Go From Here

In the past, patients and their families had to depend primarily on their physicians for this kind of information. In the last two decades, the Internet has evolved into an amazing resource for those seeking health-related information. Studies disagree on the number of Americans using the Internet for this purpose. But there is little question that a large number of people are looking for information and advice on the Internet, and that the number is growing rapidly. A Harris Poll in 2011 estimates that three-quarters of all adults have looked for health information online. According to a 2012 poll by the Pew Research Center’s Internet and American Life Project, over a third of adults have used the Internet to diagnose themselves or someone else.

This and other research findings would support the case that the health care industry owes its consumers much more consideration when it comes to accessing information online.

In cases where a health care organization can’t provide its own sources of trusted information, it should point visitors in the right direction (even if that means sending them to other sites.) More consideration should be given to how these audiences gather, digest and share this information with their health care providers, families and loved ones. More care should be given to providing the health care consumer and their advocates with as much viable information as possible, via the website.

The health care industry hasn’t made ideal use of technology in terms of the way it curates consumer relationships.

We see patients who don’t have good relationships with health care providers, a system that seems overwhelming to navigate when it comes to managing one’s own health, and a shrinking window of engagement between doctor and patient.

This is not the world of health care, nor of enhancements and options promised by technology, for which we all had hoped.

However, we have never before been so empowered by technology and the reach the Internet gives us. Now it’s up to us to rethink our approach and divert resources where they can be put to good use. That can only happen when we put ourselves in the shoes of those with whom we are proposing to connect.


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Share on Twitter or Facebook Published December 13th 2016