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At iHT2-Toronto, a Strategic Leader Calls on Healthcare Executives to Rethink the Consumer

September 21, 2016
by Mark Hagland
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Dr. Snowdon urged iHT2-Toronto attendees to imagine how consumerism will transform healthcare

At the Health IT Summit in Toronto, sponsored by the Institute for Health Technology Transformation (iHT2—a sister organization to Healthcare Informatics under the Vendome Group corporate umbrella), Anne Snowdon, R.N., Ph.D., professor of strategy and entrepreneurship and chair of the World Health Innovation Network, in the Odette School of Business at the University of Windsor (Ontario), on Sep. 21 urged healthcare leaders to rethink how they see consumers in North America and beyond.

Speaking on the topic “Consumer Trends Driving Innovation in Healthcare,” Dr. Snowdon told her audience on Wednesday morning at the Omni King Edward Hotel in downtown Toronto, that healthcare leaders from Canada, the United States, and everywhere, need to be rethinking how they perceive healthcare consumers, given rapidly unfolding social and technological change.

The broader context of this situation, Snowdon told her audience, is that the healthcare industry remains enmeshed in a very different mindset from that shared by executives in other industries. In particular, she noted, consumers are calling the shots in so many consumer-facing industries now, in which owning physical assets has melted away as a strategic advantage. “Think about it,” she said: “Uber is the largest taxi company in the world that doesn’t own any vehicles; Airbnb is the largest provider of accommodations, that owns no housing. And Alibaba, the largest seller of consumer goods, owns no stock, while Facebook, the largest provider of digital content, relies on users to provide that content.” The business and operating models in many of those industries are changing very dramatically now, she noted. Even in healthcare, we are seeing the first glimmers of a trend towards consumers driving some dynamics in the industry.

Anne Snowdon, R.N., Ph.D.

For example, she noted, there is an online group for patients with a wide range of diseases called “PatientsLikeMe,” and, she noted, “they’re running their own clinical trials.” (As explained on its website, “PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies.”) Not surprisingly, Snowdon noted, the opening up of healthcare processes to strong participation could provide “an interesting opportunity, though it could also be your worst nightmare on privacy and security.”

In any case, Snowdon told her audience, “Let’s talk about the consumer shift. When I went to nursing school and then spent a number of years in pediatric clinical care, it was a pretty compelling experience, and it was a very different time. We clinicians were trained to be the experts. We had all the knowledge, and we worked with patients and families,” as the undisputed authorities over their care. “Those days are gone,” she said. “Now, our consumers and patients are coming into clinical settings with ‘Dr. Google,’” she said, referencing the huge amount of online research that patients are engaging in before they interact with clinicians before physician and outpatient visits and inpatient stays.

“But we were never trained as clinicians to do negotiations with patients,” Snowdon continued. “No one ever taught me how to negotiate a contract; but that’s essentially what we’re doing now. The patient is coming in thinking, are you the right clinician for me? If not, I’ll go elsewhere. And 50 percent of our nurses in Canada are 50 years or older. And so they were educated for the pre-Internet world. This is not the healthcare system we thought we were going into as clinicians.”

Yet now, a new world is emerging, and that is one that will become increasingly consumer-driven, Snowdon said. She noted that Canadians are spending 45 hours per month online and 7 days a year on Facebook, while Americans are already spending 165 hours per month online, and 40 minutes a day on Facebook. Meanwhile, 56 percent of Canadians have a smartphone, and 79 percent of those who do, say that they would not leave home without it, while 90 percent of Americans have a smartphone, and 29 percent say that they couldn’t live without their smartphones.

What’s more, Snowdon told her audience, “The divide between the online world and [institution-based] healthcare has been growing. In 2012,” she noted, “44 million unique healthcare apps were downloaded. Searching for health information is now the third most popular online activity for all Internet users 18 and older. And,” she added, “as of 2012, there were over 97,000 health applications—with many more developed since then.”

So, how can healthcare and healthcare IT leaders navigate this quickly changing landscape? Snowdon parsed some of the complexity for provider leaders and for clinicians, especially physicians, around increasing consumerism and consumer health activity. “We need to be thinking about innovation, adoption of new technologies, and of course, you need to be thinking about how to filter what’s good and not,” she told her audience. For example, she said, “My husband is a plastic surgeon, and what he gets in terms of the lists of information his patients are bringing to appointments—it’s a nightmare. He refers to the piles of print-outs that his patients bring to him as ‘Dr. Google.’ And he’s told me that he can barely see two patients a day now for consultations, because of the volume of information his patients are bringing in and wanting to discuss.”

So the first element in all this is the fact that clinicians, especially physicians, are being challenged directly as authority figures by their patients, who are bringing outside information into their face-to-face encounters. The second element, related to the first, is the demand on the part of consumers for their healthcare providers to provide them with highly usable information and data, in a timely way. “Our society is increasingly relying on transparent, real-time information at a glance, from everywhere,” she emphasized. Implicitly, then, clinicians and patient care organizations are going to be competing with the array of different types of data and information that healthcare consumers/patients can obtain online from unofficial sources.

The third element in all this, Snowdon said, is that different groups of healthcare consumers are already behaving differently. We’ve been talking about ‘the patient’ or ‘the consumer,’” she said, “but I’d encourage you to think about consumers as being very different groups of people with different value propositions.” She posited a simple delineation of two different groups: consumers her parents’ ages, and consumers her children’s ages. “My parents are patient, are used to waiting, they value stable relationships with their clinicians and others, and they are very loyal to brands. They see health as a service; and they defer to the expertise of the provider. Meanwhile, my children [who are young adults] are super-impatient—they won’t wait for anything!—they are super-connected” to sources of information from a variety of sources; “and they have loyalty to value, not to a brand. What’s more, they see health as a right; they do personal research involving data; and they’re willing to negotiate relationships”—meaning that they demand certain things from their care providers, and if they don’t get those, and can’t persuade their providers to provide them, they will readily leave those providers.

Meanwhile, speaking of what has often been called the “Sandwich Generation,” Snowdon referenced Baby Boomer-aged women. “These women, who are 47, 48 years old,” she said, “make the majority of health decisions for their families. They’re caring for aging parents for more years now than the number of years that they have had their children at home.  In fact, there are 7 million women in Canada who provide care for both children and aging parents. These middle-aged Baby Boomer women value agelessness, autonomy, and personalization.”

But regardless of age, healthcare consumers are generally becoming more demanding, and they are using social media to get their way. For example, Snowdon noted, “Friends of mine had a bad experience at a hospital somewhere in Canada, and they decided to tweet about it. Within an hour of their tweeting about that hospital, the CEO of that hospital was at their family member’s bedside.”

The key point in all this, Snowdon said, is that healthcare leaders need to understand that the world that healthcare consumers are demanding is not the world that patient care leaders would create; in fact, she said, it’s clear that, left alone, the leaders of patient care organizations would simply perpetuate the status quo. “As Henry Ford said, if I’d asked people what they wanted, they would have asked for faster horses!”

So, Snowdon said, “Now is the time for provider leaders to make very big shifts in how they operate, and in how they interact with healthcare consumers. The reality is that consumer confidence in healthcare institutions is dropping. Partly, that’s because we in healthcare have been socialized as providers to tell consumers what to do.” Instead, the reality, she says, is that healthcare consumers are increasingly telling providers what to do, and that consumers will make market-shifting choices based on how well providers respond to their demands. So, she said, “We need the consumers directly connected to us as we prepare for the future.” In that context, she stated, “Future healthcare is going to be personalized and directly connected, with self-management as the dominant model, because of the dramatic growth in chronic illness. It will be driven by consumers’ ideas of what value is; and it will need to be collaborative, involving community-based collaborative care [and care management] teams. And it will be outcomes-driven.”

Asked by Healthcare Informatics what the chief takeaway for healthcare IT leaders in particular should be in all this, Dr. Snowdon said of CIOs, CMIOs, and other healthcare IT leaders, “They’ve got to speak the language of every stakeholder group, and they’ve got to be able to map out the value proposition for each stakeholder group. What is each stakeholder group interested in? For example, doctors want their work lives improved through increased time efficiency. If you give them some time back in their workday, they’ll love you. The same is true for nurses. Meanwhile, CEOs want to know not only how any change will affect the bottom line; they also are very focused on the image of their organization. And of course, consumers want increased convenience and better service.”

What is extremely important, she said, is that “You’ve got to strategically map out each value proposition. And you’ve got to understand that there are subgroups; for example, older consumers and younger consumers are totally different. I have to say,” she added, “as a practicing nurse, I was always a bit wary of IT people, because it seemed that everything they were doing would only add to my time burden. So if IT leaders can change that proposition, that will really impress clinicians and win them over,” as they help to build the IT and technological foundations for the future of healthcare.





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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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