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.

Atul Gawande on healthcare: 15 Cooks in the Kitchen and Nary a System in Sight

Maine’s Quality Counts! just had their annual conference. The statewide aggregator for health improvement, blessed with great leadership, partnership and a following, did a fantastic job getting 1,100 people there and bringing in phenom speakers.

A conference highlight was Atul Gawande @AtulGWande. Dr. Gwande, renowned in healthcare and quality circles, a surgeon at Brigham and Women’s Hospital, writer for The New Yorker magazine and best-selling author of 3 books (Better; The Checklist Manifesto; and Being Mortal: Medicine and What Matters in the End).

You can watch his full Quality Counts! presentation on YouTube:

Gawande talked about how healthcare has become so sophisticated, with 4000+ procedures and 6000 medications (is that all?), has tremendous science, with a capability to provide care to almost every person in every town. Yet we continue to drive up costs and resource use. He said that in 1970, for patients with pneumonia and heart attacks, it took 2.3 FTE of care. Now for the same patients, we need 15 FTE. 15 people who all know the plan. We’ve become specialists – but silo’d, and separated from communities. Most importantly, we don’t really have a system. We have to put health and healthcare together.

We have extraordinary technology. We are the best trained, over-educated, but with no sense of how it comes together.

Gawande spoke about how we’ve become obsessed with having the best components in healthcare. But patients may not necessarily care about living longer. How do we find out what people really want? Their goals? Priorities? Then he said an amazing thing: ASK THEM.

To do this, we as health professionals need to stop talking. We have to stop being “explainaholics“.

Some of his comments had inherent tensions. Data, measurement, quality, checklists. Then, he mentioned rigid rules for older folks in nursing homes. Rules for eating. Rules for movement. Rules for behavior. He noted what people want is to optimize their autonomy, as long as they can. Being able to eat a cookie (or have a refrigerator to open when they want) can be a simple solution with key rewards. Tangible and intangible, if you ask me.

Can we measure and focus on data, at the same time also really care? I think we have some ways to go. To measure what people value, rather than to value what we measure

Gawande had some great things to say about Maine, where we have some great improvement efforts and tremendous collaboration.

I look forward to curling up and reading Being Mortal, which I picked up at the conference. I don’t mind, though, that he slipped out of the Civic Center before he signed my copy. It was a treat to have him in Maine. To Lisa Letourneau, Director of Quality Counts: strong work, girl! 😉

Read – Jackie Farwell’s post, What Atul Gawande, medicine’s rock star, thinks about Maine health care

My research buddies at the NIH mHealth Institute (#mHealth14)

This year at the mHealth Summit, I opted to attend the 2014 NIH mHealth Institute pre-conference. This 2-day session, lead by Dr. Wendy Neilson (@WendyNilsen) from NIH’s Office of Behavioral and Social Sciences Research, gives a view of app thinking from the perspective of research, focusing on ways to use and study mHealth apps for change. This space is so important but not easy to do. Developers tend to focus on functionality, researchers on populations and study questions. mHealth research has to be practical as technology moves swiftly. No 3-year randomized control trials need apply. True transdisciplinary efforts must create agile approaches done in scientifically robust ways.

IMG_0571
Alain Koffi, MD, PhD, Johns Hopkins Bloomberg School of Public Health; Susan Woods, MD, MPH, Veterans Health Administration (@SueWoods), Linda Park, PhD, FNP-BC, U. California San Francisco; Dayo Ajayi-Obe, MD, SM, Imperial College Healthcare NHS Trust; Donna Spruijt-Metz, MFA, PhD, U. Southern California and NIH mHealth Institute Faculty (@metzlab); Amy Dunaway, MPH, MA, U. Missouri; Brad Tritle, CIPP, vitaphone e-health solutions (@BTritle); Zdenek Gutter, PhD, Czech National eHealth Centre, Stimcare; Sumal Nandasena, MD, MSc, MBBS, Sri Lanka Ministry of Health. Not in photograph: Robyn Stremler, RN, PhD, U. Toronto; EunSeok (Julie) Cha, PhD, MPH, RN, Emory University.

The best part of the experience was that it was shared. We worked in small groups at round tables coming up with problems to solve, and ideas and methods to study them. Our international group was collaborative, theorizing about serious stuff: pregnant women waiting for Medicaid eligibility assessment. What did we come up with? We decided to give women a smart phone, loaded with our ‘study app’ – connecting users to one another and to community information (Why not? It’s reasonable to think that handing out technology can improve health and cut costs, too). We were interested in studying effects of social networks and access to virtual resources — developed based on what was important in the women’s lives and designing to fit their needs. Lecturer “Billie” Nahum-Shani demonstrated her sharp methodology expertise, pushing us to ramp up our science-thinking.
IMG_0565

We probably won’t write a proposal together, but some are sure to pursue mHealth research funding in 2015. We had fun thinking about how to dig into a rapidly growing field and learned from all the speakers. Thanks to all the mHealth NIH Institute faculty (check here for future trainings). Our group gives special appreciation goes to Donna Spruijt-Metz, who kept us on our toes our 2nd day group facilitator – thanks, Donna!

Wouldn’t it be fun for this group to come back together — like Oprah — in 5 or 10 years and see what everyone’s up to? Let’s stay in touch, team!