Tag Archives: shared records

Going Mainstream: Online Sharing of Test Results With Patients

This post is the full essay published in the journal Cancer Cytopathology. The journal editor invited me to submit a piece for their “Clinician’s Corner” section, focused on patient online access to their rest results. Who could refuse?! Thanks to @CancerCytopath for making this open access & available to the public. The paper and journal can be accessed here and here.

Outside the walls of medicine, seismic shifts are affecting how health professionals do their jobs and how the public experiences care. People are harnessing information previously outside their reach and are connecting with one another online in ways not imagined a few years ago. With ready access to the Internet and the use of always-on devices, expectations have never been higher for the availability of health-related information and online services.

Inside health care, events are converging to make personal health data more transparent and accessible to patients. The Health Insurance Portability and Accountability Act secures the right for consumers to access their health data despite many who remain unfamiliar with the law and the cumbersome—and potentially costly—process for patients to obtain records. Meaningful-use incentives promote electronic health record (EHR) investment, which creates building blocks on which data can be collected and shared digitally. The advent of secure online patient portals offers a way to share data with patients. With the growth of portals, patients can access their health information and communicate with their health care teams from the comfort of their homes and the convenience of their lives.

Health systems that promote transparency by offering patients remote data access have a desire to improve quality and safety and hope to gain efficiency. The use of online secure patient portals has been associated with higher levels of patient satisfaction and access to care. With emerging research demonstrating that individuals actively involved in their health and their health care achieve better health,[1] patient portals are poised to improve outcomes. Customarily positioned as information gatekeepers who operate through in-person encounters, clinicians are ever more expected to work in an environment of shared EHR data and virtual communication.

Almost 10 years ago, Kaiser Permanente introduced online access to laboratory test results, and currently, more than 7 of 10 members have registered for the kp.org website. Viewing laboratory results is the most frequent user activity, and this is followed by secure e-mail, medication refilling, and appointment scheduling. In a survey examining the emotional reactions of portal users who accessed laboratory test results online, responders felt high levels of appreciation, calm, and relief; few experienced worry, confusion, or fear.[2] The study was notable in that patients who had discussions with their provider about result expectations reported more relief and satisfaction and less confusion than patients who did not speak with their physicians before viewing their results.

OpenNotes is a growing initiative to provide patients online access to encounter notes. A prospective intervention at 3 large health systems found study patients engaged more in their care and reported benefits from note access. Initial concerns from participating providers were largely unfounded, and none elected to stop note access after the research had ended.[3] Although pathology reports have not typically been accessible through patient portals, this has not been the case at the Department of Veteran Affairs (VA). Long a leader in digital records, VA began opening patient access to EHR data in 2000. National implementation expanded in 2010 with laboratory results accessed through the Blue Button function. Full access to clinical notes and test results expanded significantly in January 2013. VA patients with online access can view data after a 3-day hold, and pathology reports can be accessed 14 days after completion. The experience of VA patients in accessing their EHR data mirrors the findings of OpenNotes research.[4]

Clinicians voice concerns about patients viewing data without their interpretation and are worried about increasing patient anxiety and workload. Apprehension intensified with the 2014 Department of Health and Human Services ruling allowing patients direct access to laboratory reports. However, missed test results are sure to continue despite provider alerts and established patient-feedback pathways. Shared data empowers patients and promotes self-care.[5] After all, there is no greater stakeholder than the person on whom the test was performed. Research suggests that patients who access their data can improve care quality. One VA patient, after reading an ultrasound report online, remarked, “It said re-do in 6 months, but that time came and went. I called the doctor[,] who says[,] ‘Yeah, it did say that.’ So if I didn’t call, it wouldn’t have got done.” Although open data are not a substitute for a requirement to communicate test results, patients are another set of eyes helping to ensure accountability.

With no evidence of a digital revolution slowdown, health care must leverage technology while simultaneously overcoming its resistance to changing the status quo. Clinicians need to embrace the reality of open data, even in the absence of providers’ explanations. Pathologists should always be mindful that their documentation is read and downloaded by patients. Language must be clear and nonjudgmental, and standard nomenclature should be used when appropriate. These principles should also apply to clinical notes and communication between clinicians in the EHR. Diagnostic uncertainty will exist and continue to engender worry. Patients do not expect simplicity or nonmedical language, but they do want and expect transparency.

In his book The Patient Will See You Now: The Future of Medicine Is in Your Hands,[6] Dr. Eric Topol, a cardiologist and Director of the Scripps Translational Science Institute, offers a powerful vision in which health data are democratized and widely available, patients and clinicians work together as partners, and technology is harnessed to meet people’s needs in a cost-effective fashion. With shared health data, the genie is now out of the bottle.

References
1. Hibbard JH, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff (Millwood). 2013;32:207-214.

2. Christensen K, Sue VM. Viewing laboratory test results online: patients’ actions and reactions. J Particip Med. 2013;5:e38.

3. Delbanco T, Walker J, Bell SK, et al. Inviting patients to read their doctors’ notes: a quasi-experimental study and a look ahead. Ann Intern Med. 2012;157:461-470.

4. Woods SS, Schwartz E, Tuepker A, et al. Patient experiences with full electronic access to health records and clinical notes through the My HealtheVet Personal Health Record Pilot: qualitative study. J Med Internet Res. 2013;15:e65.

5. deBronkart D. How the e-patient community helped save my life: an essay by Dave deBronkart. BMJ. 2013;346:f1990.

6. Topol E. The Patient Will See You Now: The Future of Medicine Is in Your Hands. Philadelphia, PA: Basic Books; 2015.

Patient portals, Blue Button & OpenNotes are the next generation of quality.

It’s been awhile since my last blog post. Summer does that. Particularly if there’s a winning combination of sun, beach, family, fresh corn (I heart Cape Cod). You get my drift. The right factors combine, giving you a great experience.

The same thing goes for digital tools. We intuitively know what’s needed. Easy login. Nice interface. Valuable functionality. Bringing the right information at your fingertips when you need it.

Making an application easy to use and beneficial doesn’t sound so hard, right? Yet why does it take so long for health care to figure this out?

I was asked to give a webinar on the topic of Patient Portals for Maine’s HealthInfoNet last week. I focused on the combination of features that bring the most value – in other words, what people need (based on what they use) and how positive change can happen – based on evidence and experience. We have a rapidly expanding literature about this information, and this data needs bright lights shining on it, firing it up.

I did a back of the envelope summary of some evidence. Not a systematic or exhaustive synthesis, but my cumulative view of a continuously expanding bibliography of relevant papers and presentations.

Co-presenters included Steve Bien, a physician at Wilson Stream Family Practice, the first independent practice to use Maine’s health information exchange. As an early adopter, Steve touted the use of secure email, remarking that online communication not only meets patient needs but reduces workload and offers efficiency. Nice to hear that from a small practice.

Adding the patient voice to the panel was Ann Sullivan, advocate and HealthInfoNet Board member. She provided insightful, day-to-day experience of how eHealth tools add value by fitting into the patient workflow (life!) through convenience, access and helping with self-care.

Thanks to Gemma Cannon, Service Coordinator for Maine’s Regional Extension Center, for convening the group to focus on patient meaningful use!

Slides from the @hinfonet webinar are available from HealthInfoNet and on slideshare.

This IS empowerment. Patients reading their entire electronic record, Part II.

JMIR 2Today I had the privilege and pleasure to add to the scientific literature about patients accessing their electronic record including clinical notes.

Patient Experiences With Full Electronic Access to Health Records and Clinical Notes Through the My HealtheVet Personal Health Record Pilot: Qualitative Study, co-authored with colleagues Erin Schwartz, Anais Tuepker, Nancy Press, Kim Nazi, Carolyn Turvey and Paul Nichol, was published in the Journal of Medical Internet Research. Anyone can get it, since JMIR is open access. A PDF can be found on my Portfolio page.

What we did: Talk to VA patients who used the My HealtheVet Pilot, the VA’s first personal health record. It let users see most of their EHR – notes, summaries, procedure notes, imaging reports, lab test results. Copies of the data could be viewed or downloaded. It ran from 2000 to 2010. Most who enrolled were patients at the Portland VA. We wanted to hear from people who looked at their records, so we invited a random sample to attend focus groups. We had 5 groups.

What we found: Four themes. First, patients said it was a great tool to supplement usual communication. Second, it improved self-care. Like helping to better understand their conditions or remember what was recommended. Third – and this is most important – they said they became more engaged in their care. We heard great stories of participatory care, where people felt empowered to ask providers questions, or request things happen. Or not happen. And of course there was one PHR user who wanted another doctor after viewing his notes (you say disruption, I say empowerment 🙂 ). Fourth, we heard their views about notes and the electronic record. Much of it we heard before. Judgmental language…repeated content..boilerplate notes.

Some of my favorite e-patient quotes:

My Oncologist was a pretty up-front guy. But I got on HealtheVet I found out he wasn’t as up front as I thought he was…with his comments, what he had written. So, when I went to see him the next time, I said, “I’d like to know, what you think and what you know, and what you’re predicting. So, rather than just write it in there, tell me and then write it.

It just probably made me healthier than I might have been without having the information available, to either talk to the doctor, you know, just something as simple as changing a medication for something. You know, going, “Hey, look, the thing you got me on ain’t really working that great. Let’s try something different. What do you think about this?

Well, sometimes I can figure out a problem myself either by my own online research or by just thinking about it and saying, “Well, I’m going to try this and fix it without the doctors involved.

Here’s a table summary of the findings:

JMIR table

In my Part I post yesterday about this study, I shared my personal journey on sharing notes with patients. This study affected me – tipping me to start this blog!

Our results support prior research, including papers by the OpenNotes researchers, Brian Fisher in the UK, and Earnest, Ross et al.

Usually, it takes years for research to translate into practice. I’m happy to say that practice has happened already. As of mid-January of this year, VA patients have access to their full electronic record, including notes and test results through the Blue Button. For Veterans who are VA patients….GIMME MY DAMN DATA doesn’t apply. Our research can’t stop here, but it’s a whole new sandbox!