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The Federal Message is Loud and Clear: It’s Time for Patients to be Truly Empowered

April 11, 2018
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“Who controls my health data?” is a question that the government is trying to create a simple answer to

A few weeks ago, I had to transfer money from one financial institution to another, and right before I submitted the transaction, a screen came up giving me three “transfer fee” options: one for $3 that would complete the transfer in 3 to 5 days; another $10 option for a one-day transfer window; and finally an option for $30 to complete the transaction on that same day.

While this probably sounds quite steep just to send your money from one place to another (and yes, it is steep), there is at least one silver lining to the whole process: I control my financial data and I have the ability to access it, check it, and transfer it somewhere else, essentially whenever and wherever I want.

But as most people already know, consumers hardly have that affordability when it comes to their healthcare data. I go back to an exchange had last year between former Vice President Joseph Biden and the CEO of Epic Systems, Judy Faulkner. The topic was access to patient records. According to Greg Simon, president of the Biden Cancer Initiative, who witnessed the exchange, Faulkner said, “Why do you want your medical records? They’re a thousand pages of which you understand 10”. To which Biden replied, “None of your business. If I need to, I’ll find someone to explain them to me and, by the way, I will understand a lot more than you think I do.”

There was plenty of reaction to that Biden-Faulkner interaction, with most of the debate around who actually owns patient health data that is inside electronic health records (EHRs). For the most part, people just bluntly assume that patients own their data (they say, “Of course we do, it’s ours!”), but it is actually not that simple. The Health Insurance Portability and Accountability Act (HIPAA) does not specify ownership, and state laws are inconsistent. So while it might seem blatantly absurd that you and I don’t have complete ownership over our health data, in reality, we don’t.

Right after that Biden-Faulkner exchange, I recorded a podcast with Niam Yaraghi, Ph.D., a fellow in the Brookings Institution's Center for Technology Innovation, and health IT researcher, who said that Epic is not a charity and that just because a patient desires his or her medical records doesn’t mean that the EHR vendor or healthcare provider has to give it to him or her for free. Coming back to my banking analogy, Yaraghi also said at the time, “You own every penny of your money in your bank account. Why are people completely OK with paying a fee to access their own money in a bank…but when it comes to medical data, it’s different logic?”

Granted, Yaraghi might be on somewhat of an island with these thoughts, but the point is that patient medical record ownership is not as cut and dried as some might think.

The Message from Federal HIT Leaders

That brings me to last month’s HIMSS conference in Las Vegas, where the message portrayed was as clear as day: a heavier push toward patient empowerment than perhaps anything we have seen before from federal health officials.

Indeed, it was Centers for Medicare and Medicaid Services (CMS) Administrator Seema Verma who announced early on in the conference the launch of a new initiative called “MyHealthEData,” aimed at revolutionizing the relationship of U.S. healthcare consumers to their patient data. According to a CMS news release, “MyHealthEData will help to break down the barriers that prevent patients from having electronic access and true control of their own health records from the device or application of their choice. Patients will be able to choose the provider that best meets their needs and then give that provider secure access to their data, leading to greater competition and reducing costs.”

At the same time, Verma also announced the launch of Medicare’s Blue Button 2.0—a new way for Medicare beneficiaries to access and share their personal health data in a universal digital format, according to CMS. An example of Blue Button 2.0 being used in action would be a patient accessing and sharing his or her health data, including prior prescriptions and treatments, with a new doctor. Verma noted that while the Blue Button initiative has been around for years, the data has been in raw form, such as a PDF or Excel document, without useful context.

Of course, MyHealthEData is just a campaign; it’s not a mandate, or even a pilot that will go through phases of research and studying. So it’s fair to ask: does this patient empowerment push have enough “teeth” and substance going forward? I personally think it does, especially when you consider the comments that were made by HHS (Department of Health & Human Services) Secretary Alex Azar and leaders from the Office of the National Coordinator for Health IT (ONC) during that same week of HIMSS.

The idea that patients aren’t ready to understand their health data is “nonsense,” attested ONC National Coordinator Donald Rucker, M.D.. Another top ONC official, John Fleming, M.D., deputy assistant secretary for health technology reform, speaking more broadly about the healthcare marketplace, said, “Since 1965, the person receiving the care has not been the one who was shopping for it…We have to re-engage the consumer and we need to make pricing and value transparent.”

Meanwhile, Alex Azar, at a separate conference during the same week HIMSS was taking place, contended that one of the key pillars to moving in a direction in which value-based care will be accelerated and a true healthcare market will be created is “by giving consumers greater control over health information through interoperable and accessible health information technology.”

As I think back to what was said that week, and how healthcare and consumer engagement have evolved over the years, in some ways the government is basically just reinforcing what we already know and have the ability to do.

For instance, last week ONC released a guide, “Getting and Using your Health Records,” which essentially serves as a resource for patients on how “get,” “check” and “use” their health data. What’s interesting to me about this guide is that there isn’t any new information here—patients have had these rights for years under HIPAA. But maybe at the very least, awareness levels will spike up. And therein lies the key to so much of this movement: for patients to become empowered, they must be ready and willing to take control of their health.

There is still a ways to go, in my opinion, before patients are downloading their health data from their iPhones and sending it to the doctor of their choice, much like I did with my bank information a few weeks back. The American Academy of Family Physicians (AAFP) wisely pointed out in recent comments that without the interoperability of EHRs, the true value of the MyHealthEData campaign will not be realized. Just imagine how difficult/useless it would be to “be in control” of your financial information without having the ability to send money from one place to another because of a lack of agreed-upon standards or business incentives.

But at the same time, the feds are serious and much of this aligns with the administration’s desire to create a true market for healthcare. So I do think we will see continued momentum in the government’s push toward “true” patient empowerment and a healthcare world where we will one day not have to ask the question, “Who owns my health data?”

Comments? Questions? Send to @RajivLeventhal or comment below.

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N.Y. Hospital Conducts Digital Assessments of Patient Interactions

November 13, 2018
by David Raths, Contributing Editor
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Upstate University Hospital uses Vocera Rounds mobile app to gather data, provide feedback
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Physicians at Upstate University Hospital in Syracuse, N.Y., are using a mobile app to collect data about hospitalists’ behaviors during patient interactions in order to provide real-time feedback.

Amit Dhamoon, M.D., Ph.D., internist at Upstate University Hospital and associate professor of medicine at SUNY Upstate Medical University, said he was looking for a way to improve physician-patient communications.

“It is still unclear why some physicians really connect with patients and some just are not able to,” he said. “It is unclear why certain patients trust certain doctors more than others. We want to look at some basic behaviors.”

His team decided to do the digital assessment using a customized version of Vocera Rounds, a mobile application that enables clinicians to collaborate in responding to patient feedback and closing care gaps. “We needed a way to collect the data, relay it, and analyze it,” he said.

Fourth-year medical students who are going into internal medicine join the team of hospitalists on their rounds and serve as “silent shoppers,” Dhamoon said. They focus on the communication aspects of each interaction, and enter their observations into an iPad.  Residents and physicians also use the app to conduct a brief patient survey after the encounter. 

Among other things, they assess:

• how much time the provider was in the room;
• whether the provider introduced themselves;
• whether they sat down at eye level with patient; and
• At the end of conversation, did they ask if there were any questions?

Dhamoon said patients may pick up on body language or other things that physicians are not even cognizant of. “We are focusing on how to treat gall bladder disease or make their pneumonia better. We are focusing on the medicine,” he said. “We have to do that, but we also have to communicate what we are thinking.”

In an academic medical center, it is not unusual for teams of eight to nine doctors, residents and students enter a patient’s room. “Sometimes they don’t know what to do with their hands, so they stand with their arms crossed in front of them,” Dhamoon said. “For the patient, who is lying down with an ailment, it can almost feel like an inquisition.”

Dhamoon says hospital rooms are sometimes cramped and there is not a chair available. “I can say that it should be the gold standard that we are at eye level, so it doesn’t send a message to the patient that we have one foot out the door. But if we don’t have the basic tools in place, like a chair, then it is not going to work.”

Dhamoon and his colleagues are studying the effectiveness of this training approach and its impact on patient satisfaction measured by Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) surveys.  “My colleagues are incredible people. I want our patients to see how incredible they are. We get in our own way sometimes.”



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GetWellNetwork Acquires HealthLoop

November 9, 2018
by David Raths, Contributing Editor
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Company seeks to provide comprehensive digital patient and family engagement platform

GetWellNetwork, a Bethesda, Md.-based company offering a platform for improving patient engagement, has acquired Silicon Valley startup HealthLoop.

The acquisition expands 280-employee GetWellNetwork’s reach into nearly 700 healthcare providers. Mountain View-Calif.-based HealthLoop’s platform enables care teams to engage patients before and after admission through automated, daily check-ins. Customers include Advocate Aurora Health, UCSF Health and LifeBridge

GetWellNetwork said it is combining its nearly two decades of experience implementing patient engagement solutions with 30-employee HealthLoop’s expertise in mobile technologies and digital care management. The move is designed to catalyze growth in the ambulatory space and signals its plans for more investment in cross-continuum tools to connect patients, families and providers.

GetWellNetwork was named one of Healthcare Informatics’ “Up and Comer” companies back in 2014. In an interview then, CEO Michael O’Neil described how the company uses the TV set in a hospital room to enhance patient engagement. To deal with pain management, GetWellNetwork has a workflow called the pain assessment pathway. If a patient is on a morphine pill, the system interrupts the TV show every hour to ask the patient to rate their pain on a scale. "If I report a certain threshold or below, it is simply going to document that in Epic, Cerner or Allscripts," O'Neil said. "If I report a five or above, it will document but also, through a Vocera badge, signal a nurse to go to the room. That is one pathway we help deploy, where pain management is a service or quality metric that a particular organization is trying to move the needle on. We are working with healthcare systems with the courage to take the 'patient-centered mission' off the poster in their office and bring it to the point of care."

In a prepared statement about the most recent acquisition, O’Neil said:  “Adding HealthLoop to our portfolio advances our strategy to provide the most comprehensive, end-to-end digital patient and family engagement platform. The changing nature of the how and where care is delivered requires dynamic solutions to meet modern engagement challenges. With HealthLoop as part of the GetWell portfolio, we’re excited to help health care organizations rethink and accelerate their digital strategies.”




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Dr. Mark Smith’s Five Tasks for the Healthcare Sector

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Founding CEO of California Health Care Foundation challenges industry to allow laypeople to do some tasks now done by professionals
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A good keynote address gets us to challenge our assumptions and consider some new possibilities in our field, often bringing in ideas from other disciplines or markets. That is what Mark Smith, M.D., M.B.A. founding president and CEO of the California Health Care Foundation, did last week at the annual meeting of the Patient Centered Outcomes Research Institute (PCORI) in Washington, D.C.

Dr. Smith is a professor of clinical medicine at the University of California, San Francisco, and a visiting professor at the University of California, Berkeley. As a clinician, served on the front line of the HIV/AIDS epidemic in San Francisco. From 1996 to 2013, he led the California Health Care Foundation, where he helped build the organization into a leader in delivery system innovation, public reporting of care quality, and applications of new technology in healthcare. In his PCORI talk he laid out five tasks for the field, which I will paraphrase here:

1. Continue to work with providers and patients to develop robust clinically specific measures of quality.

2. Accelerate the integration and automation of quality measures into the work flow of care delivery as opposed to separate flow of funds, personnel and work.

3. Develop instruments to measure and improve self-care capability and work with industry on enabling technology that would allow laypeople to do tasks now done by professionals.

4. Think about non-creepy ways to use social media, search, shopping and other non-health data to inform care of patients.

5. Develop, promote and deploy nimble, adaptive research methodologies.

I want to touch on a few of these in detail because I think he made interesting points, some of which are counter-intuitive or go against the grain of current thinking. For instance, Task No. 1 involves quality measures, and Smith acknowledged that there are legitimate complaints from clinicians about the terrible burden in our current system of measurement. “But the answer to that is not a search for five magic measures” useful in all settings, he said. Smith added that the call for fewer measures is a false path.

The current measures are imprecise and often not compelling to patients and professionals, he stressed. The key is to develop measures that are relevant to patients and clinically significant. “We have all sorts of things important to hospitals, doctors and CFOs and CMOs,” he said. “We are just now learning how to create robust measures that are important to patients. I believe those will only be compelling to patients and their doctors if they are clinically specific. When I hear people say we need fewer, better measures, I say no, we need more better measures.”

Smith went into a few reasons why measurement is so challenging in healthcare. “Our IT systems are so primitive that the burden of collection, analysis, and reporting is substantial,” he said. “The answer is more clinically specific measures with greater integration into workflow.” In no other sector of the economy, he pointed out, are the systems for monitoring the quality of the process different from the established and funded system to do the process itself. “We have to Integrate the process of measuring quality and collecting information from patients with the view toward the ergonomic and economic integration into the work flow,” he said.

Smith turned to the concept of patient engagement, noting that everyone has a different definition. “In the early part of 21st century, patients should be engaged in the co-production of healthcare services. It is an extreme notion, but I have been known for being extreme sometimes,” he said.

In fact, Smith focused a good deal of his talk on the idea of co-production. He pointed to the fact that other industries have taken advantage of technology to allow customers to co-produce a service. For instance, people book their own travel now instead of using a travel agent; they use an ATM or bank online instead of getting money from a teller. “Those industries have economic incentive to involve us in the transaction that used to be one way from the professional to us,” he said.

Smith stressed healthcare could do more of that, citing examples such as patients in Great Britain taking their own blood pressure and managing hypertension with medications based on the results. Or patients being trained to test coagulation. Some patient cohorts are doing self-dialysis.

“We have a system that does not take advantage of modern IT,” he added, “because our payment system is based on early 20th century notion of healthcare and how it should be delivered. The only way the practitioner gets paid is if you go somewhere to get information.”

Health systems are starting to move toward involving patients in scheduling decision making, and reporting outcomes. The Open Notes movement is a big improvement in the co-production of information about patient health, but clearly Smith is envisioning more revolutionary changes.

Perhaps the most controversial topic he touched on was No. 4, finding non-creepy ways to use social media, search, shopping and other non-health data to inform care of patients. He asked the audience to imagine clinicians having access to what Google Amazon, and Facebook know about you. “I know that is creepy,” he stressed. “I get there are privacy concerns. We need to think of non-creepy ways to do it. Social media is like nuclear energy,” he added. “It can be used for good or ill. We need to try to integrate that profound deep knowledge about you into the management of your care.”

How you respond to that suggestion may reflect in part which generation you come from. Personally, I recoil from the idea of my primary care doctor reviewing my social media streams or my shopping bill from Whole Foods. But Smith said the search is for a non-creepy way to do that, so I will withhold judgement until I hear an idea that doesn’t sound creepy or Big Brother-ish to me.

But overall, Smith left the PCORI audience with a lot of ideas to consider, and he applauded PCORI researchers for “trying to figure out what is important to patients and get the right instruments to measure it.”

PCORI, he said, “is on the cutting edge of the most important thing we can do: spend time and effort and money on things that are important to patients rather than to professionals. We are just at the beginning of that process.”







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