Tag Archives: patient

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.

What part of Patient Centered Care do medical guilds not understand?

Update: Two days after the NY Times story, the American Board of OB/Gyn modified their rules allowing members to treat men for STDs and screen for anal cancer. That’s Patient Centered (and member centered)!

I try to stay positive. My dear colleague Ted Eytan says he’s “3/4 full” – I love that. Staying positive in health care can be a hard these days. Here’s an oxymoron for today: Patient-Centered Organized Medicine.

Patient centered they’re not, says the New York Times today, in Gynecologists Run Afoul of Panel When Patient Is Male, a story about Boston’s Dr. Elizabeth Stier. It seems that in her Gynecology practice she sees some men at high risk for anal cancer. She sees the condition to mirror cervical health in women, and she’s become a local expert and valuable resource to her largely low income male patients. But the OB/Gyn board drew a line and said if she treats men, she loses her specialty certification.

A quick look at the OB/Gyn Board website, and I wonder how much they know their members, or know the patients of their members. The Executive Team is all men. Of 15 Board of Directors, 10 are men. I’m not saying gynecologists must be women, but I wonder: how Patient Centered is this specialty organization? How participatory is their decision-making?

I’m reminded of a 2007 paper by Hal Sox, Medical professionalism and the parable of the craft guilds. He wrote about how important it is for medical societies (a contemporary version of craft guilds) need to put patients at a higher level than self-interested and adopt a broader code of professionalism, stating

While meeting the needs of individual patients, physicians are required to provide health care that is based on the wise and cost-effective management of limited clinical resources.

My understanding of Patient Centered is changing, coming to be more about equal footing and a balanced distribution of power. Speeches like the one Anna Quindlen gave at the American Association of Medical Colleges, AAMC, are extraordinary and illuminate rigid, problematic mindsets today. Quindlen, prize-winning author, shared her stories with med school deans and leaders about how health professionals seem to sometimes not know their patients – leading to poor quality and experiences. What is it about Patient Centered Care that medicine doesn’t get? The irony is ridiculous: we’re too busy taking care of patients. Appointments, schedules, electronic records, pagers, phone calls, faxes, secure emails, quality measurement, performance pay, and…and…

Her speech is only available until December 3rd, posted here. (posted about this on the Society of Participatory Medicine blog)

Whether it’s about learning more about individual patients’ values and needs, or the needs of the health professionals who work hard getting to know and care for their patients — it’s where we need to move. About that, I’m Positively 4/4 Full.

VeHU Session: VA OpenNotes and Expanded Blue Button

It’s an exciting time to be a patient advocate, to be in consumer health informatics and to be at the Veterans Administration. VA OpenNotes and an expanded Blue Button are coming soon to a VA near you! The health record access for patients and caregivers will be unparalleled. And potentially game-changing for healthcare teams and for health care…

The VA eHealth University, also known as VeHU, had me come to their studio in Orlando, FL, and to do a live remote session all about it. It’s also ‘on-demand’, although one has to register with the VeHU site. There’s lots of other sessions available to view as well, including one from October of this year by ePatient Dave.

My primary focus was to provide information about the Blue Button, talk about the additional data that will soon become available — clinic notes, discharge notes, and pretty much all test and imaging results — anticipated for early 2013.

I also give my ‘Top Five’ reasons for enabling this degree of health information access:

1. Technology changes patients’ lives and role in care.
2. Shared records: an idea whose time has come.
3. The evidence is in: benefits are high and risks low.
4. Veterans Voices: it’s what they want.
5. It’s time to re-design our work.

Thanks to Becky Monroe, VeHU director, and all the wonderful staff and folks at Image who do such a fantastic job.
Also indebted to @HenryWei, Presidential Fellow working with VA’s national Blue Button driver, Peter Levin (@pllevin). Henry planned to co-present with me at VeHU but he had a last-minute trip to D.C. Several of his slides on #BlueButton are in the deck.

I look forward to posting more information about this exciting development. Here’s the VeHU slides posted to slide share.