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An International Perspective on Healthcare Consumers’ Expectations

December 19, 2016
by Mark Hagland
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Accenture’s Dr. Kaveh Safavi reflects on international differences in healthcare consumer expectations

At a time when healthcare consumerism is emerging in all the advanced, industrialized nations, research into the phenomenon is bringing forward new understandings of what consumers need and want. What’s more, the phenomenon of healthcare consumerism is international, indeed, global.

Discussions around consumerism were numerous at the World of Health IT (WoHIT) Conference, held in Barcelona, Spain, in November, and extended across presentations and discussions around patient engagement, health information exchange, and interoperability, among other topics. Among those who has considered consumers, and helped lead research on the subject, is Kaveh Safavi, M.D., J.D., senior managing director of the global health practice in the New York-based consulting firm Accenture. Dr. Safavi, who consults with client organizations in the United States, Europe, and globally, sat down during WoHIT, to speak with Healthcare Informatics Editor-in-Chief Mark Hagland, about this topic. Below are excerpts from that interview.

You and your colleagues have been examining healthcare consumer attitudes, both in the context of the U.S. healthcare system, and in an international context.

Yes, that’s correct. We recently surveyed U.S. healthcare consumers around a number of topics, including access to their EHRs [electronic health records]; and we asked physicians the same questions. What we found was interesting. First, we asked healthcare consumers whether they believed that consumers should full access to their EHRs; limited access; or no access. The results were as follows: 92 percent of consumers believed that consumers should have full access to their EHRs; 7 percent said they should have limited access; and only 1 percent said they should have no access.

Then we asked physicians what level of access they believe healthcare consumers should have, to their EHRs. And only 18 percent of physicians said that they believed consumers should have full access to their EHRs, while 74 percent said they should have limited access, and 7 percent said no access whatsoever.

That’s a huge contrast.

Yes, it absolutely is. And, interestingly, 49 percent of patients believe that they already have full access to their EHRs.

What does the concept of the engaged consumer or patient mean, now, in an international context?

It depends on whether the healthcare system believes that competition should be a part of the healthcare system. In the U.S., we believe that competition for patients is a good thing; it’s a part of our model. Meanwhile, in other countries—ones with public health systems—there’s more of a sense that healthcare is an entitlement. So consumerism in those systems is being driven more as a right issue than as a market issue. When access is driven as a market issue, it tends to focus on things like appointment access. But is access on the consumers’ own terms? That’s a little bit different. We see that consumers are having expectations around things like banks and retail; so healthcare consumers are not looking at this as a competitive issue, but as a service or satisfaction issue. We’ve had a survey result finding that 49 percent of consumers say they would switch doctors over the differential in access. The barriers to switching are high, while the loyalty level is low. So this idea about the experience, separate from just appointment access, is a reflection that consumers want access and care delivery on their own terms. And we in healthcare can’t depend on the idea that healthcare is different.

Is there a conceptual difference in how patient care leaders frame consumers, versus patients? Does it change how providers interact with those who receive healthcare services?

There is a difference, but it’s one with a nuance. There was a false dichotomy for at least ten years. We said, are they consumers or patients? And we’ve discovered that they’re both, and those archetypes interact with each other. So the sick patient in the bed doesn’t know what diagnosis should occur or when, of course, meaning that they don’t have precise or educated expectations around purely clinical issues. But when it comes to a porter taking them to their bed or getting a meal on time, their expectations are very high in terms of service, just as in any other industry.

There’s a term we call “liquid expectations”—the idea that you move expectations from one segment of your life to another. I think that’s a really interesting part of healthcare that we’re starting to recognize as a reality. So if I’m building a healthcare system, how do I address service as a quality? In most industries, they recognize that service experiences are designed based around consumers’ experiences with your product. In healthcare, we don’t do that. We will do polling and try to base how we architect services around that polling, but it doesn’t make sense. We see that time and again, for example, in surveying about what telemedicine should be like—because consumers didn’t know what to expect.

We saw this in the south-central U.S., where they tried the [telehealth delivery-based] system where the physician would drive out to a center; but when patients were cajoled to show up, they preferred it, even though they had said, ‘I don’t want to see my doctor on TV.’ But they ended up loving it, because the doctors suddenly had all kinds of capacity. And from the doctors’ perspective, they were staffing multiple exam rooms, so there was more productivity, if patients didn’t show up. By setting up these centers with remote access, it worked out great. So our industry is struggling, because if it accepts the fact that it has a service opportunity, it doesn’t understand how to fix the problem.

As we move care out towards the patients, what should CIOs and CMIOs be thinking about?

The gold standard is changing towards care delivery becoming location-independent, based on where a patient would like to receive care. And it will be a blend of physical and virtual care delivery. If you take a physical experience—an example I gave came from ten years of research. If you look at advanced telemedicine, where you have a high-quality audio-video connection, including where you can do remote blood pressure, stethoscope, otoscope—a study found that in urgent care in Scotland, about 83 percent of patients can be taken care of safely remotely, as long as you have remote equipment. And historically telemedicine was in the 60s in terms of satisfaction. But patients are finding they actually prefer the virtual—they can see the same ear drum the physician is looking at, or hear the same heart sounds. So the choice is, if I have a doctor in front of me in an old-fashioned format, versus a remotely located doctor who has the tools to provide a richer experience, most patients will choose the latter. They want a personalized visit, as opposed to an in-person visit. Technology allows us to change the nature of the visit. And that kind of augmentation offers a huge opportunity to transform care.

So, how can CIOs and CMIOs be strategic about these kinds of potential changes and innovations?

The CIO has really become part of the strategy now. It used to be that the job of the CIO was to be on time and on budget; now, what’s possible is not what the operating executive of the past would even have known. And typically, the business lags the strategy; but typically, organizations follow what’s available. An example: a large U.S. healthcare system identifies the fact that they have 50 different telemedicine pilot projects going on. The enterprise needs to figure out what its strategy is. Are we doing it to improve access? Effectiveness? Affordability? You have to understand the why, and then the what and the how come out of that. A lot of people don’t really understand that. And we tell people, if you don’t have a strategy, every vendor will pull you in their direction.

And the CIO, if they’re not part of the strategy, they’re handed an implementation task, along with the total cost of ownership, and it becomes a gigantic technology maintenance problem. So I always say that having the “why” first before the “what” and the “how,” is really critical.

What should U.S. healthcare IT leaders know about any trends that are emerging right now in Europe and Asia?

We talk about affordability in the U.S., but we primarily think about it in terms of the elimination of unnecessary services. Technology is interesting—if you talk to people in the U.S. and in Europe about things like cognitive computing and AI [artificial intelligence], it prompts them to think about replacing cognitive tasks with technology. But if you have that conversation in Singapore and Japan, they think about robots, because they have a shortage of workers. They’re talking about automating physical tasks, out of necessity. There will be a convergence. Unfortunately, most countries think that the answer to the question lies in changing economic incentives. Every country thinks that changing their economic model to someone else’s, will solve the problem; and that’s emotionally comforting, but false. Healthcare costs go up at the rate of the GDP [gross domestic product] plus 1 to 3 percent in all countries—all countries’ healthcare inflation rate is still their GDP plus 1 to 3 percent.

So the real question is not how much you spend in absolute terms, but how much you’re spending on healthcare relative to your economy. And the reason for that is the cost of labor. Wages will never grow more slowly than your overall economy. And with the aging of populations and the explosion in chronic disease, unless you can eliminate some humans, you’ll never fix that. So we’ve seen in the U.S. GDP plus 2 percent, 1 percent, 1.5 percent. So we haven’t bent the curve, only dented it. Ultimately, all the remaining units of care delivery, even after we’ve taken some unnecessary services and tasks out, we’ll still be in the same place, basically. The service industries in general have lost 0.5 percent productivity, and healthcare is the worst-performing of all industries; it’s lost almost 1 percent productivity. Other industries have either moved tasks to a less expensive person, or a machine, or a customer. So when we said, how do we make healthcare safer? Electronic health records. They’ve made things safer. But they haven’t saved money.

What will happen in the next few years in all this, in the U.S., Europe, and elsewhere?

We’re going to make care more effective and more virtual. That will help us to accomplish both personalization, as well as greater productivity, so you’ll have two forces moving that forward. Meanwhile, advances in cognitive computing and AI will help us perform diagnostic testing more effectively. Diagnosis, treatment, care coordination, ancillary and supportive services, and self-care, all of those things that largely rely still now on the physical world, become possible as you start to think of new ways to bring these technologies to bear. So in the longer term, AI and cognitive computing will have a huge impact on making healthcare more effective and affordable.


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Successful OpenNotes Implementations Require Portal Changes, More Communication

December 14, 2018
by David Raths, Contributing Editor
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Some health systems report low note-opening rates; others haven’t measured
The OpenNotes movement, in which healthcare organizations offer patients access to their clinical notes in the portal, has spread like wildfire. In just a few years it has grown to 184 confirmed health systems, with another 31 that have implemented but not documented their use, and more expressing interest every day. Yet at many healthcare organizations, the percentage of portal users reading clinical notes is still quite low, according to a new white paper and recent webinar by the nonprofit OpenNotes team.
When OpenNotes asked clinical groups for data on note-opening rates, most said it was something they did not measure, and indeed most EHR portal designs do not make it easy for them to gather that data. The OpenNotes team did collect data from 26 organizations and found that four organizations, two with homegrown EHR systems and two on Epic, had the best open rates — ranging from 21 to 34 percent, followed by eight organizations with 6 to 10 percent, with the bottom 14 reporting only 0.27 to 5 percent open rates. 
“We were stunned by the results,” said John Santa, M.D., M.P.H., OpenNotes’ director of dissemination. In many organizations, turning on OpenNotes was described as a non-event. “Sad to say that is because in some cases not much is happening,” added Santa, who played a leadership role in starting the Northwest OpenNotes Consortium and he now leads the development of future consortia. One problem is that in some cases patients are not aware of their notes or can’t find them. “Now we do know of many robust implementations where tens of thousands of patients are seeing their notes and are feeling the benefits,” Santa stressed. “But for OpenNotes to lead to best outcomes, we need to take steps to maximize the benefits.”
Their white paper notes that from the data they have gathered, “it is likely multiple factors, including portal navigation, lack of or ineffective reminders to read notes, and insufficient communication strategies contribute to low note-opening rates.”
“What we have learned is that turning it on is not sufficient,” said Cait DesRoches, DrPh, OpenNotes’ executive director and associate professor of medicine at Harvard Medical School. “Evidence suggests patients are not aware that they can read notes or they can’t find them.” Additionally, clinician anxiety around transparency is still an obstacle, she said. 
Santa noted discrepancies among customers of different EHR vendors. He said that while there are many Cerner, Allscripts and Meditech customers deploying OpenNotes, they have not developed ways to generate note-opening rates for customers. Epic, he said, has launched multiple near- and long-term changes to improve note-opening rates and included note-opening metrics in recent versions of its dashboard.
During the webinar Marcia Sparling, M.D., a rheumatologist and medical director for informatics and specialties at the Vancouver Clinic in Vancouver, Wash., made some observations about her organization’s experience. The Vancouver Clinic started piloting OpenNotes in 2014. It has a high patient portal usage rate of 82 percent, and early note-opening rates were close to 20 percent. But when the clinic did an Epic upgrade with a redesign of MyChart, the rate fell to 11 percent. “We looked at how we could help patients find the notes and why they might be missing the prompts,” Sparling said. They made a few changes. First, after-visit summaries generate an e-mail urging patients to log in, a hyperlink directs them to their past appointments page, and once there, they see wording that says “Click on your clinical notes.”
“We re-labeled that tab to ‘clinical notes’ to be more obvious,” she said. The current rate or note opening sits between 22 and 24 percent, she added, noting that there are some wide variations between specialties, although there is no obvious explanation for the disparities.
The OpenNotes white paper spells out the steps the Vancouver Clinic took to improve their note-opening rates: 
• Quick Link within MyChart patient portal (labeled ‘View clinical notes shared by your provider’); 
• Text at top of Visit Summary section directs patients to click on Clinical Notes tab; 
• MyChart home page ‘News for You’ contains paragraph on notes and a hyperlink; 
• Notes are viewable on both the Visit Summary report and the Clinical Notes tab (with some exceptions); 
• Clinicians’ notes are shared by default (with a few exceptions); 
• Auto MyChart message sent to portal user when visit is closed: Message subject reads ‘New MyChart@TVC Visit Note’; the body of message contains navigation steps and hyperlink directing patients to Appointment and Visits page.
OpenNotes is in the early stages of working with clinicians, patient groups and EHR vendors to develop metrics around use of the portal and note-opening rates. It says the definition used by Epic is reasonable as a starting point (this definition applies to notes shared over any defined time frame): Numerator = Notes listed in denominator that are viewed by a patient portal user. Denominator = Signed notes from completed encounters written on a portal active patient (or patients activated within a month of the visit) that are shared to patient portal.

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Who Isn’t Using Patient Portals? New Study Sheds Light on Portal Use

December 12, 2018
by Heather Landi, Associate Editor
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About two-thirds of adult patients did not use an online patient portal in 2017, and research indicates vulnerable and disadvantaged patients are less likely to use these technology tools, according to a study published in the November issue of Health Affairs.

Technologies such as online patient portals, which provide secure internet access to medical records and test results in addition to email communication with providers, can improve health care quality. And, evidence thus far shows that access to online portals increases patients’ engagement and adherence and may reduce unnecessary utilization and spending.

However, while the majority of adults in the United States believe that online access to personal health information is important, disparities in portal access exist.

“Findings from multiple studies that analyzed different population groups, including nationally representative samples, consistently show that members of racial and ethnic minority groups, older patients, and people of lower socioeconomic status are less likely than others to access an online portal,” the study authors wrote. The study was led by Denise Anthony, professor of health management and policy and sociology in the Department of Health Management and Policy, University of Michigan School of Public Health. Anthony and her co-authors also note that “inequities in access to new and beneficial technologies can exacerbate existing disparities in health.”

One national study, a March 2017 by the U.S. Government Accountability Office (GAO), found that only about 15 to 30 percent of patients who were offered access to a portal used it, with lower use among people living in rural and high-poverty areas.

“To identify appropriate levers that can be used to address inequities in online portal access, policy makers and providers must have a clear understanding of who is and is not accessing portals, as well as the reasons for not accessing them,” the study authors said.

For the study, titled “Who Isn’t Using Patient Portals and Why? Evidence and Implications from a National Sample of U.S. Adults,” researchers analyzed information about 2,325 insured respondents to the nationally representative 2017 Health Information National Trends survey to examine characteristics of patients who do not use portals and the reasons why they don’t them. By identifying who is not using portals and why, the researchers sought to uncover barriers and reduce disparities.

The study indicates that about two-thirds (63 percent) of insured adults with a health care visit in the previous 12 months reported not using an online patient portal. The research indicates that nonusers are more likely to be male and age 65 or older, have less than a college degree, not be employed, live in a rural location, be on Medicaid, and not have a regular provider.

These factors, along with race, were also related to whether a patient reported receiving an offer to use a portal.

Relative to females, males had significantly higher odds of not being offered access to and not using a portal, the study indicates. Members of racial minority groups (specifically, non-Hispanic blacks and non-Hispanics of other races—including Asian Americans, Native Americans, Native Hawaiians, and Pacific Islanders) had significantly greater odds of not being offered a portal. Among only those who were offered a portal, these groups reported rates of using a portal comparable to the rate of non-Hispanic whites.

The study also found that people with only a high school diploma or less were significantly less likely than those with college degrees to have been offered access to a portal. Patients with Medicaid insurance were significantly more likely to report not having been offered access to a portal and not using one, compared to people with other insurance.

Patients who lacked a regular provider were significantly more likely to report not having been offered access and not using a portal.

When evaluating reasons why people did not use a portal, the researchers did not find evidence of disparities in technological barriers. The reasons patients gave for not using portals included the desire to speak directly to providers and privacy concerns, both of which require recognition of the important role of provider communication and patient-provider relationships, the study authors note.

The study authors conclude that healthcare providers will need to address patients’ privacy and security concerns to enhance provider-patient communication.

“Reducing disparities in portal use will require that providers, particularly those serving vulnerable populations, communicate with all patients about portal use and have the capacity to discuss these technologies with patients,” the study authors wrote.

“Health care providers and plans can increase patients’ use of portals and narrow disparities in that use through direct communication about the benefits of portals, while also addressing patient-specific needs and concerns. Such interventions will require recognition that providers’ communication with patients takes time—an extremely scarce resource in clinical practice today,” the study authors concluded, while also noting that careful monitoring of who is and who is not using new technologies, and why, and designing technologies to address patients’ needs, will help ensure that such innovations do not exacerbate disparities but rather lead to improvements for all.

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AMIA, AHIMA Call for HIPAA Modernization to Support Patient Access

December 7, 2018
by Heather Landi, Associate Editor
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Modernization of the 22-year-old Health Insurance Portability and Accountability Act (HIPAA) would improve patients’ access to their health information and protect their health data in a burgeoning app ecosystem, according to two leading health IT industry groups.

During a briefing on Capitol Hill Wednesday, leaders with the American Medical Informatics Association (AMIA) and the American Health Information Management Association (AHIMA), health informatics and health information management experts discussing how federal policies are impacting patients’ ability to access and leverage their health data.

While other industries have advanced forward with digital technology and have improved individual’s access to information, and the ability to integrate and use information, such as booking travel and finding information about prices and products, healthcare has lagged. Healthcare has not been able to create a comparable patient-centric system, AMIA and AHIMA leaders attested.

“Congress has long prioritized patients’ right to access their data as a key lever to improve care, enable research, and empower patients to live healthy lifestyles,” AMIA president and CEO Douglas B. Fridsma, M.D., Ph.D., said in a statement. “But enacting these policies into regulations and translating these regulations to practice has proven more difficult than Congress imagined.”

“AHIMA’s members are most aware of patient challenges in accessing their data as they operationalize the process for access across the healthcare landscape,” AHIMA CEO Wylecia Wiggs Harris, Ph.D. said. “The language in HIPAA complicates these efforts in an electronic world.”

AMIA and AHIMA recommend that policymakers modernize HIPAA by either establishing a new term, “Health Data Set,” which includes all clinical, biomedical, and claims data maintained by a Covered Entity or Business Associate, or by revising the existing HIPAA “Designated Record Set” definition and require Certified Health IT to provide the amended DRS to patients electronically in a way that enables them to use and reuse their data.

According to AMIA and AHIMA, a new definition for “Health Data Set” would support individual HIPAA right of access and guide the future development of ONC’s Certification Program so individuals could view, download, or transmit to a third party this information electronically and access this information via application programming interface. Alternatively, a revision of the current DRS definition would provide greater clarity and predictability for providers and patients.

The groups also noted that a growing number of mHealth and health social media applications that generate, store, and use health data require attention as part of a broader conversation regarding consumer data privacy.

Congress should “extend the HIPAA individual right of access and amendment to non-HIPAA Covered Entities that manage individual health data, such as mHealth and health social media applications, the two groups said. The goal is uniformity of data access policy, regardless of covered entity, business associate, or other commercial status, the group leaders said.

Beyond HIPAA, during the briefing Wednesday, panelists discussed the success of efforts to share clinical notes with patients during visits, including the successful OpenNotes initiative, and recommended that federal officials look for ways to encourage more providers to share notes with patients through federal policies, such as Medicare and Medicaid payment programs.

“More than two decades after Congress declared access a right guaranteed by law, patients continue to face barriers,” Thomas Payne, M.D., Medical Director, IT Services, UW Medicine, said in a statement. “We need a focused look at both the technical as well as social barriers.”

What’s more, AMIA and AHIMA recommended federal regulators clarify existing regulatory guidance related to third-party legal requests, such as those by attorneys that seek information without appropriate patient-direction.

“HIM professionals continue to struggle with the existing Office for Civil Rights guidance that enables third-party attorneys to request a patient’s PHI,” Harris stated. “We recognize there are necessary circumstances in which a patient has the right and need to direct their health information to an attorney. However, AHIMA members increasingly face instances in which an attorney forwards a request for PHI on behalf of the patient but lacks the information required to validate the identity of the patient. As a result, the HIM professional is challenged as to whether to treat it as an authorization or patient access request, which has HIPAA enforcement implications

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