Home » Opinion/Editorial » The Para-EHR: All the Information that Should Be in Your Patient’s Electronic Health Record, But Isn’t

The Para-EHR: All the Information that Should Be in Your Patient’s Electronic Health Record, But Isn’t

Last week’s 2013 Partners Connected Health Symposium included a panel discussion called, “The Para-EHR and the Para-normal: Are the Non-permanent and Non-captured Texts, Emails and Phone Calls the Centerpiece of Patient Care That We Don’t Talk About?”

The panelists were:

Moderator: Andrew Watson, MD, MLitt, FACS
VP of International and Commercial Services and Medical Director at the Center for Connected Medicine at University of Pittsburgh Medical Center

Eleanor Chye, PhD
Area Vice President, AT&T ForHealth at AT&T Advanced Business Solutions

Kent Gale
Founder & Chairman, KLAS Enterprises, LLC

Rasu Shrestha, MD
Vice President, Medical Information Technologies at University of Pittsburgh Medical Center

Mobile Phones are more widely available than Toilets

In a lively and inspiring conversation, the panelists described how leaps forward in information and communication technology have given clinicians powerful new tools to capture, understand, and communicate information about our patients, allowing us to provide patient care that is at once more effective, more efficient, and more human. In an era in which most clinicians and patients have mobile phones, patients often email their clinician about symptoms, clinicians call and text each other about patients, clinicians record and share digital photos or videos of their patients’ symptoms, and telemedicine is practiced via video chat using a device that, as Dr. Watson pointed out, is more widely available than toilets. With broader and deeper awareness of patients’ symptoms, behaviors, preferences, and insights, and the capacity to share that information quickly, clinicians are increasingly able to meet Dr. Shrestha’s goal of “bringing the patient’s story to life” to facilitate higher-quality, more patient-centered care. And the advances continue. For example, as Mr. Gale pointed out, Glass, Google’s new wearable computer with an optical head-mounted display, could be a powerful tool for collecting and sharing health information. And at the University of Pittsburgh Medical Center, Dr. Shrestha and his colleagues are working on a Twitter-like messaging system in which information is “tagged” to the patient so that all the authorized healthcare professionals “following” that patient can see the new information in real time.

The Electronic Health Record (EHR)

In parallel with those developments, a great deal of time, money, and effort has been and will be devoted to bringing our cumbersome medical record systems into the information age. Spurred by high healthcare costs, high medical error rates, and new laws, Electronic Health Record (EHR) vendors have developed, and healthcare providers have implemented, complex computer systems dedicated to securely storing and sharing our patients’ healthcare information. However, despite all that effort, the panelists unanimously agreed that today’s EHR systems are inadequate for today’s healthcare needs. By focusing our efforts on facilitating billing and replicating our analog medical records in digital form, Dr. Shrestha argued, we’ve created systems in which “I don’t know where to put the patient’s story.”

The “Para-EHR”- The Uncaptured, unstored, and non-secure conversations that account for more than 90% of the patients “true” health record

Yet that story is being heard and is improving patient care, the panelists agreed. Having found no home in the EHR, it resides in the “para-EHR” – the uncaptured, unstored, and non-secure phone conversations, emails, text messages, images, videos, and even scribbled notes that the panelists unanimously agreed account for more than 90% of the patient’s “true” health record. As Dr. Watson put it, it’s not the para-EHR that’s “outside” the EHR – rather, the EHR is “on the outside” of healthcare as it is actually practiced today.

So how can we get our EHR systems caught up? Dr. Shrestha cautioned that the purpose of this panel was to start asking some questions that have not been part of the EHR conversation, not to provide solutions. That said, the panelists did have some ideas. Dr. Chye emphasized that secure solutions for texting, photos, and videos do exist – we simply are not using them. Likewise, vendors claim to have wiki-like multi-collaborator platforms, but those products have yet to be made implementable and easy to use. She suggested that EHR vendors should open their software platforms to third-party innovation by allowing outside developers access to their Application Programming Interface (API).

Making apps Patient-centered, not Provider-centric

Mr. Gale added that “most apps are provider-centric, not patient-centered – it’s obvious we need to move in that (patient-centered) direction.” He also commented that, as new technologies like Google Glass continue expanding the para-EHR, we’ll have to isolate individual components of the para-EHR and decide how many and which of them we want to include in our EHR systems.

An audience member asked about a place in the EHR for information entered by patients about, say, their eating habits. Dr. Shrestha agreed that patient-entered information could be valuable, but cautioned that we’d have to find a way to manage the signal-to-noise ratio, capture the essence of the information, and present it in a way that’s usable to clinicians.

Lack of interoperability between EHR systems

Dr. Shrestha and Dr. Chye both expressed concern about the lack of interoperability between EHR systems. Dr. Shrestha argued that “we’re running out of time” to define national standards to ensure interoperability. Dr. Chye agreed with an audience member that a Patient Health Record (PHR) – “one single record with the patient at the center” – could be valuable, but noted that “PHR as a business model has been challenging.” She wondered whether it might make sense to follow the Australian model (Australia has implemented a national Personally Controlled Electronic Health Record (PCEHR), wherein each patient has a single record for all of their healthcare interactions anywhere in the country).

An attorney in the audience brought up the legal ramifications of including information in the patient’s medical record that could possibly be subpoenaed during the “discovery” process of a legal proceeding. He asked if any of the panelists had seen parts of the para-EHR subpoenaed. They had not, but Mr. Gale argued that, “If it’s there, it’s ultimately going to be discoverable.” Dr. Shrestha wondered aloud, “If there’s valuable information that could save the life of the patient that we’re not recording because of legal fears, are we so incapable of coordinating around a solution for that?”

(This post was written by David Brick. David Brick is a contributing author and a counselor in addictions and health behavior change, with a particular interest in Motivational Interviewing. He is currently a Health Coach at Brigham and Women’s Hospital, working with opioid-misusing patients in the Phyllis Jen Center for Primary Care. He intends to pursue a career in Medical Social Work. You can connect with David at www.linkedin.com/in/davidebrick or @primarycare_ugs on Twitter.)

Jennifer M. Joe, MD

Jennifer M. Joe, MD

    My passion is healthcare optimization, whether that is with innovation, making scientific discoveries, or improving delivery. I love bringing people and ideas together and making projects work. With this, medicine exists to improve lives, and I will strive to always help patients and those around me.

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