Feb 1, 2016/By Jessica Hatch, RN

Tapping Into Patient-Controlled Data

Telehealth, telemedicine, eHealth, digital health.  The market is flooded with these health IT solutions as the future of healthcare. In reality healthcare organizations and providers alike have offered forms of this ‘new-age’ care delivery service for years- decades even- with the utilization of home monitoring, secure messaging, virtual visits, portals, and so forth. So what is different now?

2 acronyms – HIE (Health Information Exchange) and APMs (Alternative Payment Models)

Everyone has been chugging along and defining what HIE means to them, based on local capability or need. Thanks to Meaningful Use Stage 1 and 2 there has been some structure and shared successes with the collective consciousness focused on preventing readmissions, getting patients on portals, and connecting cross-continuum providers to clinical data. The Continuity of Care Document (CCD) really ignited the long overdue need to standardize the hospital discharge summary, while implementing the same nomenclature (e.g., “LOINC’ing” your labs) enabled a new level of interoperability. But when we talk about patient engagement and the proliferation of patient monitors and devices, self-management and advocacy – where does HIE fit into that ecosystem? That’s where the patient centered story starts.

HIE offers a lot with today’s technology and interoperability advancements.   We can now send, receive, consume, normalize, and distribute data. We can send alerts and notifications to providers, care managers, and diabetes educators to engage them in real time.

But where is the layer that puts the patient directly in front of their own data? Where is the normalization and the nomenclature that helps the patient understand what they are reading? It‘s time for vendors to add natural language processing to all of these robust CCDs and Transition of Care (TOC) documents- for organizations and their HIT leaders to demand the functionality to extract key information and deliver it to the patient in an understandable way. At the very minimum, we need to offer platforms in more than one language. Even those that translate information to the patient’s primary language do so in such a limited scope and fail to translate the most critical information like instructions for medication management. It is simply not enough to offer the headings of each page in a patient portal in Spanish but then deliver the indication, dosage, administration route, frequency, and side effects in English. How is this helpful? How is this safe? How is this a high quality service? Where is consideration for the patient in this technology?

We are all patients at points in time – Take the patient perspective when you evaluate your strategy.

Imagine a future where patients can upload their own weights, glucometer readings, and blood pressure results directly through their personal health devices so that it’s accessible to their providers. Or, where consumer-captured data feeds in to existing algorithms and analytics and yields patient decision support with alerts sent to patients directly, not just to their provider or care team. This data is as mobile as possible – Patients are walking around with it in their pocket or purse, on their wrist or in the sole of their shoe – So how can we interface with the patient to connect with the data most important to the patient’s health status?

It is clear many consumers are ready and willing to share their personally-collected data as a mechanism to self-motivate or share their successes with friends. Social media companies have caught on to this phenomenon with applications like MapMyRun displayed on Facebook. Look at Fitbit’s functionality that allows people to challenge one another to increase their daily steps as part of a friendly competition. Technology that’s NOT driven by, and in most cases NOT connected to, the individual’s provider is engaging people by the millions to live healthier lifestyles. How can healthcare organizations harness this momentum?

Indicators on the horizon offer promise – but will they deliver?

Hopes from Stage 3…

HIE was meant to share data standards, normalize and make sense of it – MU Stage 2 certainly tackled that. Telehealth and telemedicine has always been about innovative ways to capture information, and consumers have now taken that to a whole new level. Finally, in Stage 3, we see indication that the patient will be an active contributor and receiver of data and information. We see the language “patient-centered” in the summary of stages for the first time. What form this will take is still to be determined.

Hopes from CMS ACOs…

In combination, HIE and telehealth are key to patient engagement. And patient engagement is the missing ingredient linked to many of the ACO shortcomings, particularly in the Pioneer model.

CMS is showing signs of catching on to this whole patient engagement thing with the creation of the Next Generation ACO, which will allow patients more freedom in the services they choose and more flexibility for covering telehealth and IT-enabled health care. So will vendors, clinicians, and organizations be ready to deliver? Will they have a strategy that aligns HIE, telehealth, and patient engagement to develop a successful ACO and live in the value-based world?

What can we do as consumers, as clinicians, as healthcare organizations and thought leaders?

Start the conversation. Remember the cause.

As a consumer inform your provider of the new technology you have to assist yourself in achieving your health goals. We all need to be active participants in our own health and as patients we have an obligation to tell our providers what our needs are, what we are looking for and expecting, and how we are driving our own health outcomes through technology.

As the clinician, ask your patients if they use any of this technology or are interested in obtaining it, and if they would like to share data with their care manager. Some technology will facilitate patient engagement and aid in healthy lifestyles while a lot of it won’t or isn’t evidence-based nor safe even. Let’s reinforce the technology that will lead to better health outcomes for our panels of patients and collectively work to dismiss the rest of the noise.

As healthcare organizations and thought leaders, push the limits and make demands of your vendors to offer such interoperability and integration. Work with your key stakeholders and vendors to make integration fit for purpose – employ realistic integration strategies for capturing the longitudinal picture of data over time vs. limited sets of snapshots in time. Go back to your HIE strategy, ask yourself and your team if the strategy includes true patient engagement efforts, if it is patient-centered, and if these work streams align with milestones in your APMs, your ACO, and your overall population health approach.

We’ve been in this world for a while and talking about all of this technology for a while. Sometimes we need to return to the root question: How are we engaging patients in what they personally perceive as health?