Tag Archives: data

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.

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.

Must See MedTV: Gimme My DaM Data

The BEST and BRIGHTEST Rock Stars ever to take the stage for shared health data just released the video Gimme My DaM Data! It’s an absolute must-see & must-show. Disperse widely, participatory medicine advocates!


Ross Martin, MD (@R!ossMartin, founder of The American College of Medical Informatimusicology debuted a phenom performance by e-Patient-musicians singing Gimme My DaM Data….[DaM = Data About Me]!

Stars include @ePatientDave @HarryGreenspun, Ben Greenspun, Chris Brancato, with cameos by @Todd_Park, @Jamie_Heywood. Way to go, guys.

Ross D. Martin, MD, MHA, FACMImimi
(c)2012 The American College of Medical Informatimusicology

Gimme My DaM Data (Data about Me)

Well it’s one for the doctor
Two for the nurse
You say you’re tryin’ to treat me

Gimme my DaM data (Data about Me!)
Gimme My DaM Data (Data about Me!)
Gimme my DaM data
It’s all about me so it’s mine

You can cut out my heart
Take it to the dump
Feed it to the dogs
Replace it with a pump
You can make me pop pills
Just to keep me alive
But there’s one more thing
I gotta have to survive

Gimme my DaM data
Gimme my DaM data
Gimme my DaM data
It’s all about me so it’s mine

You can knock me out
To treat my gloom
Lock me up
In a rubber room
You can tie me down
And shock my brain
But just one cure’s
Gonna ease my pain

Gimme my DaM data
Gimme my DaM data
Gimme my DaM data
It’s all about me so it’s mine

You can send me your bill
Charge me anything
Drive a nice car
Live like a king
With all the dough
That I pay
Tell me why is it so hard
To get my data right away

Gimme my DaM data
Gimme my DaM data
Gimme my DaM data
It’s all about me so it’s mine

Gimme my DaM data
Gimme my DaM data
Gimme my DaM data
It’s all about me so it’s mine

Now adding to Data Liberatión: Patient Data Generatión!

Move over, Data Liberacion! In the words of Todd Park, who wants to Free the Data!, and e-patient Dave, who wants to Let Patients Help!….there’s a new era —

Patient Data Generación!

There’s been some great postings and stories about patient-generated data. Empowered and engaged people who dig into their health data and try to use it to their advantage. And share it with their doctors to help THEM! (and I’m not talking about blood pressure and blood sugar monitoring)

In A Graphic Use Of Drugs: How One Patient Visualized His Health Data, Forbes wrote about Ken Spriggs, a Chicago commodities trader who has dealt with a variety of inflammatory conditions. He mapped out, over years, the number of drugs he has been on. A particular quote from the Forbes post is particularly emblematic of the struggles people/patients have in making sense of their health and their healthcare:

It took four arduous months for Spriggs to collect his data in the form of 600 loose papers, many handwritten, from doctors and hospitals in Chicago, Fort Collins, Co., and Charleston, S.C.; he just finished.

Most of you probably haven’t seen another patient-generated data posting on the MPN Forum, a social media site on myeloproliferative neoplasms. A recent entry, The Empowered Patient, is a phenomenal post by my dear friend and colleague, Michael Goldstein. Michael knows more about empowering and empowered patients than anyone. He’s a physician, great teacher and researcher (on patient-provider communication), and now leader and visionary at the Veterans Health Administration’s National Center for Health Promotion and Disease Prevention.

After you read this excerpt from Michael’s post, you’ll want to read the whole thing:

My oncologist marveled at my quite rudimentary spreadsheet, created from an online Personal Health Record (PHR) program. He asked me if he could make a copy of the graphs to scan into my chart, remarking, “I wish all my patients brought in graphs like these!” The good news is that we all can! And, there is evidence that if we monitor and track our own medical data, we can improve the quality and safety of our care.

I realize these are two real smart guys who know data inside and out. Thinking most people wouldn’t be able to do this? Maybe. With the right tools, and the right support, they probably can.

Patient Data Generation – a consumer health revolution!