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OpenNotes: What Members of the Northwest OpenNotes Consortium Have Learned So Far

June 6, 2016
by Mark Hagland
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Homer Chin, M.D. will share the lessons learned to date around OpenNotes, with AMDIS Symposium attendees this month

As CMIOs and other medical informatics leaders gather together in Ojai, California, for the 25th Annual Physician-Computer Connection Symposium, sponsored as every year, by AMDIS (the Association of Medical Directors of Information Systems), one of those who will be speaking at the conference, to be held at the Ojai Valley Inn and Spa, will be Homer Chin, M.D., who until May 2013 was CMIO of Kaiser Permanente Northwest. The Portland, Ore.-based Dr. Chin remains an affiliate faculty member at Oregon Health and Sciences University. And he is the physician champion for the Northwest OpenNotes Consortium, a group of about 40 clinical informatics leaders in the Pacific Northwest, representing 11 health systems in the metropolitan area that encompasses Portland, Oregon and Vancouver, Washington, and which came together in 2013 to collaborate to promote the OpenNotes movement.

Dr. Chin has been helping to lead forward the Northwest OpenNotes Consortium for three years now,  since, at the point of his retirement from Kaiser Permanente Northwest, he was asked to lead the Consortium, which is promoting patient care organizations’ opening physician notes to patients. His title with regard to OpenNotes is Associate in Health Information Technology for OpenNotes.

Indeed, Dr. Chin, together with Alistair Erskine, M.D., CMIO of the Danville, Pa.-based Geisinger Health System, and the Portland-based John Santa, M.D., who until recently was director of the Consumer Reports Health Ratings Center, will speak on that very topic at the AMDIS Symposium this month. In that regard, he spoke recently with HCI Editor-in-Chief Mark Hagland about the OpenNotes movement, and what’s been learned at the Pacific Northwest OpenNotes Consortium, at Kaiser Permanente Northwest, and elsewhere about this important movement. Below are excerpts from that interview.

What was the original purpose, as you and colleagues from numerous health systems in your area gathered together three years ago, in creating the Pacific Northwest OpenNotes Consortium?

To begin with, we had asked Tom Delbanco, M.D. and Janice Walker, R.N., the co-directors of OpenNotes, to come out to talk with us, back in 2013. And after hearing from them, we decided to foster a collaboration among these normally competitive organizations, and move forward as a community. And one of the questions was, could we accelerate OpenNotes adoption collaboratively? And the answer was yes. They all agreed, and one of the things that we strategically put into place was that we said, we’re going to release a press release—we chose April 8, 2014 as the date for that announcement—and we said, if you want to be in the press release, you had to commit to implementing OpenNotes in 2014 or soon after. So that sort of spurred them on, and if they were willing to commit, they were in the press release, and if not, they wouldn’t be included. So most organizations did commit.

What were the processes like among those organizations, as they prepared to meet that date?

Well, once they decided, yes, we’re going to go forward, then Kaiser-Northwest, where I had just stepped down as CMIO, said, they were willing to go “big bang” with the implementation. Most organizations did so with small pilots. But my colleagues at Kaiser-Northwest just said, there’s enough evidence for this, and let’s just do it. So Tom and Jan came back and talked to Kaiser-Northwest, and help lead education and persuasion. And at Kaiser-Northwest, they decided to go ahead and implement it in April 2014, for their entire organization except for a few departments like mental health.

Was there any anxiety or resistance initially among physicians at Kaiser-Northwest?

Well, among the chiefs of the departments, when they saw the data, they agreed that we needed to do this. In the rank and file, some physicians weren’t as enthusiastic about OpenNotes, so one of the they things they decided was that the default would be availability to patients, but in a way that allowed for a box that opted out of a particular note that couldn’t be shared. So for those physicians feeling resistance, that gave them the option.

And what percentage clicked the box, and kept their particular notes closed?

Initially, it was a quarter of one percent. And that number has further decreased. It’s a very small percentage of one percent.

In other words, once they went live at Kaiser-Northwest, the physicians were happy and satisfied with it?

I would say, by and large. The thing that we hear is that it was a non-event. Physicians have a lot of reservations, but then you open up the medical record, and physicians concede that they haven’t heard anything about it. Occasionally, we get one physician here or there who reports that a couple of patients have complained. But the predominant thing we hear is that it was a non-event. And from the patient perspective, it’s all positive. So we’ve heard a lot of positive things that replicate the original studies, which find patients are more likely to be engaged in their care, more likely to take their medicines; their opinion of the healthcare system goes up, they’re more likely to approve of their physicians. And that happens with every organization that goes live.

Those were some of the main points you brought forward when you spoke at the AMDIS PCC Symposium last year?

Yes, we talked about that, and then we had some folks from Legacy Health as well. We had four or five physicians on a panel, talking one after the other, from various health systems. The panelists besides myself were John Santa, M.D., Michael McNamara, M.D., and Amy Chaumeton, M.D.

And this year?

This time, we [Drs. Chin, Erskine, and Santa] are going to talk about where we are. We’ll talk about our experience; we’ll reinforce the fact that it’s really a non-event when organizations go live with OpenNotes. And we’ll talk about some of the positives. Physicians worry that it will require more work of them; we’re seeing some evidence that it actually entails less work for them. One survey asked, are you contacting your doctor more or less often? A certain percentage contact their doctor more often, a certain percentage report no change, but the percentage who say they’re contacting their doctor less often, is higher than the percentage who are contacting their doctor more often.

What is your theory on that? Those are patients who are contacting their doctors less often are individuals who would have been confused about or would have forgotten something their doctor said?

That’s right. And so we’ll give an update there, and then we’ll talk about what some of the other organizations are doing. Some are doing things a little differently sometimes, or more innovatively. And Alistair Erskine is going to talk about the experience at Geisinger, which is one of the organizations that implemented OpenNotes earlier, and are doing some things around inpatient OpenNotes, using a thing called MyChart Bedside, where they give patients an iPad at admission that allows them to check things while they’re hospitalized, and then the patients are sent home with, for example, videoconferencing built into the iPad. And they’re collaborating together, physicians and patients, on something called OurNotes, which is a collaboration between the patient and physician in doing the note together, if you will.

Overall, what would you like other medical informaticists, and non-clinician IT leaders as well, to know about all of this?

Overall, that this is coming; this is becoming more standard, it’s no longer on the fringe. Our estimate is that more than 7 million patients now have access to their notes. Most of the pieces are there, as long as they have Epic or Cerner; while many other vendors are moving forward with the capability. Allscripts is another one that has the capability, and that has some user organizations implementing OpenNotes. There are organizations we’re talking to that are Allscripts organizations. So the message is that the capability exists, and it’s becoming the standard of care. And there are advantages to organizations that implement this in terms of attracting patients. And there are potential patient safety benefits. And CRICO, the insurer for Harvard Health Plan, is looking into this.

It seems clear here that any challenges to implementing OpenNotes really revolve around physician culture issues, not actual technological issues, correct?

Yes, to me, the number-one thing is overcoming physician resistance. You need the technological elements, but what’s hardest to overcome is physician resistance. And even though some physicians have a concern, it ends up being a non-issue. So it’s a win-win all around. It helps with keeping patients in the health system, and attracting patients, and it may help with patient safety—it’s another set of eyes looking at the medical record. And in fact, by and large, it may make the life of the physician easier. The cost is negligible, and it’s becoming the standard of care. So what’s not to like about it?

And we’ll share examples of where Geisinger and the University of Iowa are moving with this; the University of Iowa has basically opened its entire outpatient and inpatient record to patients. And the VA has been doing this for years and years. I think it was back in 2010… The VA was an early adopter of Blue Button, and with Blue Button, VA patients have access to and can download, their entire medical record. And when we did our Consortium, the VA was actively engaged as well. And they were very helpful in saying, we’ve been doing this for years and years. So they were helpful in bolstering the case for moving forward in this direction.

One element of natural dovetailing here seems to be around the fact that patients/consumers are being pushed ever more aggressively by their employers into higher-deductible health plans, in which they are burdened with ever-higher percentages of their healthcare costs. Naturally, they’ll want to better understand the components of their care and to become more directly engaged in all this, right?

Yes, you’re absolutely right.

And what would you say to non-clinician IT and executive leaders about the OpenNotes phenomenon.

Exactly what you said earlier, that this is coming now, and they need to prepare for this. And we’ll be presenting as well at the CHIME Fall Forum in November (to be held in Phoenix, and sponsored by the Ann Arbor, Mich.-based College of Healthcare Information Management Executives). And I’ll be co-presenting with John Kravitz in November, on this. And now that AMDIS and CHIME are working together, AMDIS is going to have a session right after the CIO Fall Forum, so we’ll probably present there as well.






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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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Health Systems Work with Epic on Electronic Patient-Reported Outcomes for Oncology

November 18, 2018
by David Raths, Contributing Editor
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With eSyM app, patients will provide feedback to their cancer care team via the EHR

Six U.S. healthcare systems are sharing a $9 million grant to research introducing electronic patient-reported outcomes (ePROs) into the routine practice of oncology providers to improve symptom management and to decrease hospitalizations.

The National Cancer Institute, in association with the Beau Biden Cancer Moonshot Initiative, recently announced the funding of the collaboration, the SIMPRO (Symptom Management IMplementation of Patient Reported Outcomes in Oncology) Research Center. The SIMPRO team will work with Epic, the EHR system used by all six participating institutions, which are New Hampshire-based Dartmouth-Hitchcock, Dana-Farber/Brigham and Women’s Cancer Center in Boston, Baptist Memorial Medical Center in Memphis, Lifespan Cancer Institute in Rhode Island, West Virginia University Cancer Institute, and Maine Medical Center in Portland.

SIMPRO will develop, implement, and evaluate an ePRO reporting and management system through an app called eSyM. Patients’ smart devices will enable a secure connection to their cancer care team via the EHR, and facilitate symptom tracking following cancer surgery or chemotherapy. The study will test whether monitoring the symptoms patients experience and providing coaching on how to manage them can decrease the need for hospitalizations and emergency room visits.

“The opportunity to partner directly with Epic and their resources, to build these tools into our electronic health record, means in the short-term the research is more likely to bear fruit “and in the long-term that successful strategies can be disseminated around the country.” said Dartmouth-Hitchcock Chief Health Information Officer Peter Solberg, M.D., in a prepared statement,

After development and pilot testing, eSyM will be fully integrated into the EHR at each participating center, allowing for direct communication and real-time updates for clinicians who will have access to a dashboard of patients’ symptoms to prioritize outreach efforts and coaching.

The SIMPRO investigators will conduct a randomized trial to evaluate implementation of eSyM from a patient, clinician and health system perspective. Across all study phases, the implementation, adoption, acceptance, and adaptation of the ePRO system will be critically evaluated to promote better delivery of cancer care.



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