Healthcare was late to the party, but over the past 10-years the industry has converted from an almost exclusively paper-based world to a digital one. With readily available funds i.e. $26 Billion from the Feds) and effectively a mandate for providers to adopt EHRs, it should be no surprise we ended up with a huge variety of disjointed systems and have to back track to make them all talk together. The so called “interoperability problem”. I put that in quotes because it’s not the technical problem that many think it is, but rather a 3-part business problem:

  1. Policy: Healthcare data is heavily regulated. The regulations are complex and make it easier to not share.
  2. Business: The current reimbursement scheme does not incentivize sharing.
  3. Process: Pre-digital workflows are still in place on top of the new digital landscape. We’re not taking full advantage of the clinical data.

For “provider-generated healthcare data” to reach its full potential we need to solve the Policy, Business and Process problems. Once we do, the tech will come through.

Enter Patient-Generated Healthcare Data

In the midst of the existing interop problems, a new opportunity has arrived.  There’s a growing demand, if not need, to incorporate mountains of patient-generated heath data (PGHD) into the clinical record and workflow.

The Office of the National Coordinator (ONC) defines PGHD as “health-related data created, recorded, or gathered by or from patients to help address a health concern”. It differs from traditional clinical data in that it’s generated, tracked and controlled by the patient. We’re talking everything from sleep, exercise and nutrition data tracked with Fitbits and mobile apps to readings from more sophisticated home health devices that track glucose levels, blood pressure and more.

No doubt there’s value in PGHD, but for the healthcare industry to realize it in any meaningful way we’ll have to solve the same 3-problems of Business, Policy and Process.

The Business Problem

This one needs to be broken down into two sub-parts itself:

  1. The patient business problem – Most patients will quickly get past the novelty of self-tracking if they don’t yield tangible benefits themselves. This is why so many wearables end up in the drawer after a few months of use. How do we tie data collection to real benefits that the patient can feel physically and/or financially?
  2. The provider business problem – More data means more work and more risk (in the current workflows). If we add work without commensurate compensation (and without changing the workflows), then uptake will be slow. This should be addressed as we move to value-based care, but that isn’t going to happen overnight.

The Policy Problem

HIPAA covers data generated in a traditional clinical setting, but there’s a regulatory black-hole over much of the PGHD-universe. In many cases, the only thing protecting the consumer is the app-store policy and the lengthy privacy statements that no one reads. This in and of itself doesn’t present an immediate problem for PGHD progress, but if left unchecked you can be sure the politicians will get involved.  If PGHD is going to reach its true potential, we absolutely must avoid the data stalemate that has resulted from the easily-induced FUD (Fear, Uncertainty, Doubt) of HIPAA (i.e. I can’t do that cuz’ HIPAA).

The Process Problem

This is where the rubber meets the road. We’ll never realize the true value of PGHD in a clinical setting if we don’t adjust the workflows to incorporate it smoothly and take full advantage of it. There are several hurdles on this path:

  1. Data Quality – If the physicians don’t trust the quality of the data they won’t use it. Period.
  2. Data Quantity – In many cases data can be used to identify trends and improve the physicians’ chances of making a correct diagnosis or catching an issue earlier.  It might shrink the information gap that exists between office visits or inspire an important checkup that otherwise wouldn’t have happened. In other cases, more testing could lead to false positives and the increased risks and costs that come with them. And we’re not all on the same page here.  The internet lost its mind last year when Mark Cuban suggested regular testing could be beneficial.
  3. Data meaning – We still don’t know what it all means. It’s important that we collect the data so that we can ask questions of it and test our theories, but as this article showsDigital Health is harder than you might think. In it they give an example of a patient whose step counts plummeted to almost zero because… she was feeling better! It turns out she was an author and her pain made it difficult to sit at her desk. When the pain subsided, she sat at that desk in 12-hour chunks, happy as can be, doing her life’s work.

Learning from experience

The PGHD industry can learn a lot from the existing clinical-data interoperability problem. First, identify what would be valuable for the clinician, the hospital system and the patient. Then figure out how to get someone to pay for it.  If there’s business value it’ll work. Otherwise, it won’t. Second, PGHD leaders need to get out ahead of the policy problem. You can see that happening with groups like Airstrip and Humetrix advising congress on HIPAA policy. Showing that they take patient privacy and security very seriously will go a long-way toward preventing knee-jerk overregulation when some bad black swan event occurs. Finally, the process problem is best solved by focusing on a few very specific use-cases that tie to the value props identified for patients, clinicians and hospitals. Don’t just collect the data and put it in the EHR because “it might be useful”. That’s what we’ve tried to do with clinical data and one of the main reasons why we don’t have interop. Collect it, analyze it and test your theories behind the scenes, but keep it out of the clinical workflows until you know what it can do. As with the traditional interop problem, once we solve these issues the tech will come through (i.e. checkout Validic).

#hcbiz 24 Discussion Details

On Wednesday, August 3rd the Business of Healthcare community will discuss the “Progress and Current Uses of Patient-Generated Health Data (PGHD)”.

12:00 PM EST – Tweetchat

We’ll start with a tweetchat from 12-12:30 PM EST that asks 3 questions in 30 minutes:

Q1: What are the best use-cases for Patient Generated Health Data (PGHD) in any setting (personal, clinical, wellness, etc.)?

Q2: What are the primary hurdles to the widespread use of PGHD and realization of its full potential?

Q3: What are some ways that #healthcare businesses can prepare for the use of or get started right now with PGHD in their workflows?

Follow the #hcbiz hashtag on Twitter or use an app like to join the conversation.

12:30 PM EST – The #hcbiz Show! on Blab

This week Shahid Shah and I welcome a few very special guests to the show for Episode 24:

Chris Edwards, Chief Marketing Officer – Healthcare & Wellness Technology at Validic

John Sharp, Sr. Manager, Consumer Health IT, Personal Connected Health Alliance (PCHA)

Greg Caressi, Senior Vice President, Healthcare & Life Sciences at Frost & Sullivan

We’ll discuss the “Progress and Current Uses of PGHD” and dig into the hurdles ahead as PGHD makes its way into the mainstream clinical setting. Subscribe here!

Patient Generated Health Data (PGHD)