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Genealogy Studies and Personal Health Records

Posted on December 2, 2015 I Written By

Erin Head is the Director of Health Information Management (HIM) and Quality for an acute care hospital in Titusville, FL. She is a renowned speaker on a variety of healthcare and social media topics and currently serves as CCHIIM Commissioner for AHIMA. She is heavily involved in many HIM and HIT initiatives such as information governance, health data analytics, and ICD-10 advocacy. She is active on social media on Twitter @ErinHead_HIM and LinkedIn. Subscribe to Erin's latest HIM Scene posts here.

If you ask around, you will hear that many people are interested in their genealogy studies and family history. I have even begun to dabble in it as well and it truly is fascinating. There are many apps and kits available to help people with this trend of building an online family tree with pictures and records. These studies have even expanded into DNA testing to show your true heritage and makeup.

Online personal health records (PHR) are also an important tool to keep track of your history but more in the sense of chronic conditions, surgical history, and medication records to be shared with your next provider. So if it’s so interesting to maintain a detailed history of who you are and how you came to be using genealogy, shouldn’t there also be more interest in maintaining online PHRs? After all, your family history does play a pretty significant part in your personal health.

Your family history is part of your medical record because sometimes looking to your family’s past can help healthcare providers better understand your diagnosis and predisposition. When studying your genealogy, you can find out the genetic conditions that may have led to an early death in some of your family members.  How your parents or siblings died can be very important when looking at hereditary issues.

It seems we in HIM have struggled for many years to promote PHR adoption but not for lack of trying on the part of healthcare providers. There have been several big initiatives pushing for healthcare consumers to keep an organized PHR with the latest push coming from Meaningful Use. We now have the technology and capabilities to collect and store healthcare data electronically which can easily be shared through electronic patient portals and HIE.

Patient portals allow patients to monitor their health conditions, lab results, and upcoming appointments. By educating patients on how to care for certain conditions or maintain a healthy lifestyle, patients are empowered to drive their own care. Patients should be at the center of all healthcare provided the same way someone is the main branch that begins a family tree. Perhaps we should follow along with the popularity of genealogy tools and applications and make PHR tracking easy and useful by using technology that links people together to share information. This may be more difficult with sensitive health information but proper authorization should allow owners of the information to share it as they please.

If you’d like to receive future HIM posts by Erin in your inbox, you can subscribe to future HIM Scene posts here.

HIM Professionals and the Patient Portal

Posted on October 21, 2015 I Written By

Erin Head is the Director of Health Information Management (HIM) and Quality for an acute care hospital in Titusville, FL. She is a renowned speaker on a variety of healthcare and social media topics and currently serves as CCHIIM Commissioner for AHIMA. She is heavily involved in many HIM and HIT initiatives such as information governance, health data analytics, and ICD-10 advocacy. She is active on social media on Twitter @ErinHead_HIM and LinkedIn. Subscribe to Erin's latest HIM Scene posts here.

One of the hot topics in healthcare that has been consistently developing and growing over the past few years is the patient portal. Since many different EMRs and portal platforms are used across hospitals and physician offices, each facility is left to develop policies and procedures for what will be released through the portals and how they will be used. There are no specific standards for patient portals, aside from those needed to meet Meaningful Use requirements, which results in different experiences and functionality for end users.

HIM involvement with patient portal implementations has been a little spotty over the years from what I gather from my peers. I heard someone say we “missed the boat” on patient portals. I don’t necessarily agree but I do see inconsistencies in the level of HIM involvement. When it comes to developing policies governing the content that will be released through the portal, HIM professionals are the experts on this initiative. HIM professionals have always been the stewards of the medical record and keeping release of information processes secure and appropriate. There has been a focus on encouraging patients to keep a personal health record long before EMRs and patient portals came to exist. So how could some HIM professionals get left out of the patient portal process?

My first assumption is that patient portals came to exist mostly, although not solely, as a result of Meaningful Use initiatives. If you have had similar experiences to mine, you have witnessed Meaningful Use initiatives typically being handled by IT professionals. As a result, patient portals have fallen under that umbrella from a technology standpoint but I see great opportunities for HIM professionals to be involved to optimize the content shared for the end users. Since the main intent of patient portals is to encourage patients to be engaged in their own care, these portal initiatives have much more benefit beyond attesting to Meaningful Use and should be incorporated into organizational strategic plans for patient engagement.

There has been a lot of discussion around the struggle of increasing patient portal participation. A common factor in patient portal adoption is the lack of patient competencies in using the technology involved. Some patient populations do not frequently use computers, email, or mobile applications which are all a part of the patient portal functionality. To address this at my facility, we created a position within the HIM department to coordinate all patient portal functions including enhancing the user experience by creating frequently asked questions and answers, troubleshooting issues that patients may have when attempting to login, and resetting portal passwords as needed among many other initiatives. Policies were developed to address who can have access to the portal information, how the patients confirm their identity to log in, what is released, and the duration of the availability of the information. We have an interdisciplinary team that contributes to the patient portal process but having the point person reside in the HIM department makes the most sense for governing the entire concept.

One thing to remember is that patient portals do not eliminate the need for traditional release of information processes because we release information to many different requestors for different purposes. The portal does not include every patient document due to the sensitive nature of some results therefore requests for entire charts and abstracts are still necessary in some cases. Patients should participate in the portal for the personal benefit of being proactive in their own healthcare but they should not expect it to replace release of information. I encourage HIM professionals to be involved in the patient portal process in an administrative capacity. The strides made with patient portal optimization are key in optimizing the transition to health information exchange (HIE) concepts which also require heavy HIM involvement.

If you’d like to receive future HIM posts by Erin in your inbox, you can subscribe to future HIM Scene posts here.

Kaiser Permanente Branch Joins Epic Network

Posted on December 26, 2013 I Written By

Anne Zieger is veteran healthcare editor and analyst with 25 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. She can be reached at @ziegerhealth or www.ziegerhealthcare.com.

Though it apparently held out for a while, Kaiser Permanente Northern California has signed on to Epic Systems’ Care Everywhere, a network which allows Epic users to share various forms of clinical information, Modern Healthcare reports.

Care Everywhere allows participants to get a wide range of patient data, including real-time access to patient and family medical histories, medications, lab tests, physician notes and previous diagnoses. The Care Everywhere network debuted in California in 2008, and has since grown to a national roster of more than 200 Epic users.

Many of the state’s major healthcare players are involved, including Sutter Health, as well as prominent regional players such as Stanford Hospital and Clinics, USCF Medical Center and UC Davis Health System, according to Modern Healthcare. Kaiser Permanente Southern California also participates in the network.

According to Epic, the Care Everywhere system allows patients to take information with them between institutions whether or not both institutions use the Epic platform. Information can come from another Epic system, a non-Epic EMR that complies with industry standards, or directly from the patient.

But of course, the vendor likes to see Epic-to-Epic transmission best, as it notes on the corporate site: “When an Epic system is on both sides of the exchange, a richer data set is exchanged and additional conductivity options such as cross-organization referral management are available.”

Care Everywhere also comes with Lucy, a freestanding PHR not connected to any facility’s EMR system. According to Epic, Lucy follows patients wherever they receive care, and gathers data into a single source that’s readily accessible to clinicians and patients. Patients can enter health data directly into Lucy or upload Continuity of Care Documents from other facilities.

While connecting 200+ healthcare organizations together is a notable accomplishment, Care Everywhere is not going to end up as the default national HIE matter how hard Epic tries. As long as the vendor behind the HIE (Epic) has a strong incentive to favor one form of data exchange over another, it cuts down the likelihood that you’ll have true interoperability between these players. Still, I’ve got to admit it’s a pretty interesting development. Let’s see what healthcare organizations have to say that try to work with Care Everywhere without owning an Epic system.

P.S. It’ll also be interesting to see whether Epic is actually “best” for ACOs, as a KLAS study of a couple of years ago suggested. More recent data suggests that best-of-breed tools will be necessary to build an ACO, even if your organization has taken the massive Epic plunge.

EMRs Now A Patient Draw At Hospitals

Posted on November 5, 2013 I Written By

Anne Zieger is veteran healthcare editor and analyst with 25 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. She can be reached at @ziegerhealth or www.ziegerhealthcare.com.

In the past, the mere fact that a hospital had adopted an EMR wasn’t news in and of itself — at least not to a hospital’s current and potential patients. After all, hospitals didn’t let everyone know when they upgraded its network or added backup storage facilities, right?

These days, however, EMR adoption has become a consumer attraction, enough so that hospitals announce their go-live with press releases and public spectacle.

One example comes from Colorado Springs, CO-based Memorial Hospital, which is part of the University of Colorado Health system. Memorial, which launched its EMR this past weekend, spent $30 million on an Epic system.

The launch comes complete with a portal, My Health Connection, allowing  patients to access their medical records, request appointments online, communicate with doctors via secure e-mail and receive test results. The portal is also intended to make it easier for doctors throughout the UCHealth system to access patient records.

The Memorial press release announcing this milestone lumps the Epic implementation in with a laundry list of accomplishments aimed at selling consumers on the facility, including the hiring of 30 physicians, Chest Pain Center Accreditation with PCI and Primary Stroke Center Certification.

As this announcement points up, an EMR launch is seen as a consumer marketing win, not just another project completion by the IT department. Of course, that’s the case partly because the launch comes with the release of a portal offering convenient data access and appointment scheduling. But I’d argue that EMRs have grown sexy enough in consumers’ minds that the mere use of one has some cachet by itself.

Now, this marketing strategy can backfire if the EMR launch goes poorly. For example, I’m sure the C-suite execs at Sutter Health were dismayed when the nurses’ union there went public with safety concerns about the Epic EMR implemented across the system.

For the most part, though, I think we’ll see hospitals bragging about their new EMR if it offers any advantage to consumers. EMRs have become a prominent enough part of medical care that implementing one wins the institution some brownie points.

Howard University Hospital Rolls Out Mobile PHR for Pre-Diabetic Young Adults

Posted on June 26, 2013 I Written By

Anne Zieger is veteran healthcare editor and analyst with 25 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. She can be reached at @ziegerhealth or www.ziegerhealthcare.com.

Howard University Hospital has kicked off a research study, using wireless technology, to help at-risk young adults in the District of Columbia change their behavior to prevent their developing diabetes.

The program involves giving African-American adults aged 18 to 24 who are diagnosed with pre-diabetes access to a mobile PHR and activity tracker which are synchronized wirelessly with the Web-based PHR.

Howard is giving young adults in the program free access to the NoMoreClipboard PHR for their smartphones, along with a FitBit Zip wireless activity tracker which counts the number of steps taken, distance covered and calories burned per user. The study also includes a separate “lifestyle group” which will not receive the technology, but will attend group meetings addressing their condition.

Once synched up with the Web-based PHR, the technology group’s data will be available to clinicians with Howard’s Diabetes Treatment Center, who will use the data to provide coaching to program participants.  Data from the Center’s EMR will also populate the PHR, creating a patient health record participants can bring with them to other providers.

The program will also include sending a variety of text messages to the young adults in the technology group, including reminders to interact with the PHR and 75 health and behavioral tips which will be dispatched over the course of a year.

To examine results of this intervention, the program will study changes in Patient Activation Measure scores — a validated 13-item measure used to assess patients’ ability to self-manage their chronic disease — at three months and one year.  Researchers also plan to look at changes in BMI and hemoglobin A1c levels at the same intervals.

Cleveland Clinic Expands Access To EMR Information

Posted on June 12, 2013 I Written By

Anne Zieger is veteran healthcare editor and analyst with 25 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. She can be reached at @ziegerhealth or www.ziegerhealthcare.com.

The Cleveland Clinic is stepping up patients’ access to their medical information by providing secure online access to most of the data stored in their medical files.  The newly-available data will be accessible through the Clinic’s existing patient portal, MyChart, according to EMR Daily News.

Currently, patients who use the Clinic’s MyChart app can view a limited list of data , including their after-visit summary, medications list, allergies, immunization records, preventative care details, laboratory results, and radiology reports. If they want to see any more of their information, they have to get a hard copy of their patient record.

However, the new MyChart EMR offers patients access to just about every type of information doctors can see, including pathology records, x-ray reports, physician notes and lists of current health issues doctors use  to describe a patient’s health status. It will also offer access to recent concerns and known diagnoses.

This marks the most recent of several steps the Clinic to expand patient access to their medical records. Earlier this year, EMR Daily News notes, reports associated with medical images including MRI, CT, ultrasounds, and mammograms were made available online through MyChart. Starting this month, the Clinic will start automatically releasing pathology reports to patients through MyChart, though there will be a delay which gives the patient a chance to have talked to their doctor about the report prior to seeing it.

The EMR system is expected to be fully transparent to the patient sometime next year, Clinic leaders say.

Expect to see a series of announcements of this kind, folks. Increasing healthcare data transparency is clearly on everyone’s agenda, and though leading organizations like the Cleveland Clinic may be at the forefront, what they’re doing is likely to become the standard for hospitals and clinics in the not-so-distant future.

The PHR Concept Is Dead

Posted on June 11, 2013 I Written By

Anne Zieger is veteran healthcare editor and analyst with 25 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. She can be reached at @ziegerhealth or www.ziegerhealthcare.com.

For several years, the healthcare community has struggled with elusive beast known as a personal health record.  The PHR was designed to fill a hole in the sharing of electronic health data by getting patients involved with filling in gaps in their own health information via a Web browser.

The idea is not new.  In fact, according to WIkipedia, the idea of a “personal health log” goes all the way back to the 1950s, though scientific literature didn’t begin to take it on until after 2000, the Web encyclopedia says.  So for decades, healthcare professionals have looked at ways in which private individuals could do more to document changes in their own health.

Fast forward to today, and what have we got?  A bunch of approaches which involve the consumer in their medical data, including:

Patient portals:  Typically, these portals offer access not only to various forms of basic clinical data — such as test results — but also a means of setting appointments with doctors’ offices and a means of communicating with physicians via secure e-mail.

Direct access to EMRs:  In some cases, the portal established by a healthcare organization offers some limited direct acccess to EMR data, offering patients a look at a broader cross-section of data.

Giving patients access to doctors’ notes:  Of late, some organizations have been experimenting with giving patients direct access to their doctors’ notes, experiments which have largely been satisfying to parties on both sides of the equasion.

Certainly, these approaches involve patients more in their health information, but at the same time, in no way make him or her responsible for maintaining their own health records electronically.

If you’ll notice, the core notion of a PHR  — that patients should keep their doctors informed of med changes, allergies, procedures and the like — appears to have dropped out of the picture completely. It seems that after struggling with getting patients involved in being data entry clerks, it works much better to give patients access to data and encouraging them to learn from what they see.

In other words, despite much earnest effort, it appears that the core PHR concept is dead. Long live its better-adapted successors.

Boston Children’s Creates Special Adolescent PHR

Posted on May 22, 2013 I Written By

Anne Zieger is veteran healthcare editor and analyst with 25 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. She can be reached at @ziegerhealth or www.ziegerhealthcare.com.

Creating PHRs for adolescents is trickier than preparing them for adults. While childrens’ and adolescents’ PHRs are usually controlled by parents, there are some areas in which teens have a right to privacy, including any discussions about sexually transmitted diseases, reproductive health, substance abuse and mental health information.

At Boston Children’s Hospital, they’re grappling with the problem of a creating a PHR which protects the adolescent’s right to privacy and confidentiality of such information without sealing parents out of areas which are public. This is a difficult problem, given that confidential information is generally seeded throughout EMRs, writes the hospital’s Fabienne Bourgeois.

To address the complex problem of giving adolescents appropriate access to their PHRs, BCH has developed a custom-built portal to meet both hospital and adolescent patient needs, Bourgeios says.

Adolescent patients and parents access the portal separately, through linked accounts.  Parents have sole access until the child turns 13, at which point both get access. At 18  years, the patient becomes the sole owner of the portal account, and unless other constraints exist, the parent link is deactivated, she notes.

Within the portal, sensitive content has been identified and tagged, such as pregnancy-related labs, genetic results, confidential appointments, and possibly sensitive problems and medication.  Right now this data is filtered from both parent and adolescent accounts, but in the future it will flow only to the adolescent account. “This solution does take a lot of time and effort, but best replicates current clinical practice,” Bourgeious notes.

This is quite an interesting project. It’s good to see researchers taking on unique privacy challenges involved in treating adolescents.  Any efforts which engage a population in their own health and make them confident their privacy will be protected are to be commended.

Patient EMR Access May Be The Biggest Cultural Shift

Posted on April 15, 2013 I Written By

Anne Zieger is veteran healthcare editor and analyst with 25 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. She can be reached at @ziegerhealth or www.ziegerhealthcare.com.

As most readers probably know, U.S. doctors are skittish about giving patients full access to their medical records. That fact was underscored by a recent Accenture study, which concluded that 65 percent of doctors think patients should only have limited access, and 4 percent feel patients should have no access.

While I have no proof of this, my gut feeling is that these results aren’t just a snapshot in time, but rather a sign of a stubborn problem that’s not likely to melt away quickly. Though much of the high-level thinking about EMRs counts on building collaborative patient relationships over shared records, that thinking may be flawed.

Why are doctors hanging back from full and free disclosure of electronic health data?

Self-consciousness:  Doctors may say things in records that they’d be a bit embarrassed to reveal. To some extent, this is a problem whether the doc is  using paper or an EMR, but EMRs are trickier for doctors to use, adding to the awkwardness factor if a patient questions their work or feels offended by the commentary.

Poor collaboration skills:  If patients get to see their records, they’re likely to become all e-patient-ish and want to have more control of their care.  Old-school doctors aren’t trained to think this way, nor are they likely to want such a relationship temperamentally.

Low digital comfort generally:  Even among younger physicians, there are those that are naturally wired and those that only use computing devices when they must. I’d argue that when you toss in the generation of doctors who trained 100 percent on paper, you’re looking at a large population of physicians who may never quite be on board with touchy-feely data sharing.

Bottom line, data sharing with patients requires a cultural shift which a surprising number of healthcare pros seem ill-equipped to embrace.  I believe it is this cultural shift — from patient as object of notes to patient as co-creator — which will ultimately pose the biggest obstacles to getting value from EMR investments.

Yes, it’d be nice to think that as doctors get more used to living with EMRs, a large number will loosen up, but I doubt that’s the case. Let’s hope the cynic in me is wrong this time.

Hospitals, Health Systems And Clinics Adding Portals, But Consumers Not Synched Up

Posted on December 17, 2012 I Written By

Anne Zieger is veteran healthcare editor and analyst with 25 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. She can be reached at @ziegerhealth or www.ziegerhealthcare.com.

With Meaningful Use Stage 2 requiring that 5 percent of patients use them, a growing number of health systems, hospitals and clinics have rolled out patient portals, according to a recent study by KLAS. In fact, 57 percent of providers now offer a portal, typically connected to their enterprise EMR, KLAS found.

The thing is, somehow these efforts aren’t reaching consumers. In a new Wolters Kluwer Health survey of 1,000 consumers, only 19 percent said that they have access to a personal health record.

It’s not that patients don’t want to be engaged in their health — 80 percent of respondents said greater control of healthcare is positive — but it seems that they either don’t like or don’t know how to find the portals available to them.

Ultimately, the broad mass of consumers simply don’t seem to see a crying need to use portals as of yet. Seventy-six percent of respondents to the Wolters Kluwer survey said that they have the information and tools they need to manage basic healthcare functions such as choosing providers and researching treatment options, clearly dwarfing the number who care to look at their own patient data.

That being said, there’s a small (but I’d argue, growing) minority of patients who do take connections with providers seriously. Nineteen percent of respondents told researchers that the ability to communicate via e-mail with doctors and nurses and schedule appointments online was an important factor in choosing a medical practice. In other words, there’s clearly a wired contingent out there which would probably respond well to a truly useful portal.

How can hospitals and clinics get patients engaged in PHR use?  My gut instinct is that consumers won’t give a hoot about PHRs until they become a tool that’s part of their medical or hospital visit. If doctors work with a PHR, turning the visit into a collaboration, patients will be motivated to follow up and review what they’ve learned.

I guess what I’m saying is that we should start by getting doctors engaged with PHRs as a means of getting patients involved. If they do that, PHRs will go from being some Web site to a valuable tool for sharing care information.  If not, don’t expect the number of PHR-interested consumers to climb anytime soon.