Patient-generated health information is the future of healthcare

July 31, 2013 | By More

Robert Rowley, MD
Twitter: @RRowleyMD

“Patient engagement” has certainly become a buzz-word in the realm of modern health IT. Medical practitioners as well as hospitals hope to encourage patients to interact with them using on-line tools, and Stage 2 Meaningful Use criteria (which go into effect beginning in 2014) require that at least 5% of a clinical practice’s patients actually use their patient portal at least once during the year.

But this approach has largely been one-way: clinicians making visible to patients a summary of their health records (medications, problem lists, immunizations, allergies) as well as recent lab test results. Some elements of two-way communication provide additional value, such as secure two-way messaging between patients and providers, or making one’s own appointments online.

The underlying data, however, has historically been physician-centric, rather than patient-centric. What is exposed is a subset of what is in the clinician’s EHR. Actual patient-generated information has not (yet) been a major part of the equation.

Shifts in perspective
At a recent conference, the idea that patient-generated data is the future of healthcare was explored. In order that patient-generated and patient-centric health data can indeed become the core of a health record, several current barriers and shortcomings would need to be overcome:

  1. There would need to be a unified place where patients can log in and see all their information in one place. Currently, each provider who gives a patient their login to see their patient portal exposes only what is in their own EHR. Patients who see multiple physicians using multiple different EHR systems would thus have multiple logins, and would only be able to see a segment of their data in each place. A universal PHR (personal health record) needs to become mainstream, tying all the different EHRs together.
  2. Self-entry of health data needs to be easy, dynamic and meaningful. It can start with something as simple as an electronic replacement of pre-visit questionnaires, replacing the dreaded clipboard that patients are asked to fill out for each provider, often for each visit. A description of the current reason for the visit, as well as a Review Of Systems, can be captured in patient-facing products, and then be exported to their physician’s EHR (or at the least, printed out and handed to the office if an export won’t work).

The physician bias against accepting patient-reported data into their charts needs to be overcome. Many physicians don’t trust data from patients – it might be wrong, or might have erroneous conclusions. “Patients don’t understand their problem lists the way that physicians do” is often heard. “Much of the data entered by patients is extraneous.”

So whose information is more trustworthy? Is there as much concern about the “extraneous” nature of clinician-entered data in electronic health records as there is with information supplied by patients? This was part of the discussion at the conference.

I am reminded of an adage taught in medical school: “if you listen carefully, patients will tell you what is wrong with them.” In an e-world, the same thing is true. If there are tools that are capable of good, valid “interview techniques”, the information obtained is very valuable. After all, an engaged patient is passionately motivated to ensure the correctness of their information, arguably with more focus than teams of physicians who are seeing large numbers of patients all day.

Lessons for health IT
This shift in orientation – from solely clinician-centric health data to one shepherded by patients themselves – has an impact on how we build health IT tools. Yes, we need good EHRs to address the workflows within physician offices and within hospitals. But the next-generation of critical tools need to be patient-centric, and need to be able to tie together all the EHRs in play around oneself.

Patient-created, and patient-curated information is the key to the future. We need to build tools that are based on this assumption. They need to be in line with what consumers are accustomed to in other aspects of their lives – they need to work on mobile devices as well as the web. Therefore, the data needs to be cloud-hosted, while being secure at the level required by HIPAA. They need to be things that consumers (patients) can sign up for on their own, be validated and authenticated, and can reach out to their clinicians, hospitals, health plans, etc., pulled from the patient-side, rather than necessarily pushed from the clinician-side.

We are starting to see the emergence of these kinds of products in the marketplace now. Though still early (EHRs have been around for a while, and have matured over the years, yet patient-centered health IT tools are in their infancy), I am excited at the prospects in this arena. Over the next one or two years, we are likely to see a burgeoning of products that put consumers (patients) in the center, and link all the other members of the healthcare team into one unified place. This will change how we approach healthcare in a profound way.

Dr. Robert Rowley is a practicing family physician and healthcare information technology consultant. This article first published on his blog. From its inception through 2012, Dr. Rowley had been Practice Fusion’s Chief Medical Officer, having created the underlying technology in his own practice, and using that as the original foundation of the Practice Fusion web-based EHR. Dr. Rowley brings a depth of experience and expertise in health care as well as health IT, having been in clinical practice for 30 years, including experience as a Medical Director with Hill Physicians Medical Group and as a developer of the early EMR system Medical ChartWizard. His family practice in Hayward, CA has functioned without paper charts since 2002.

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Category: Patient Engagement

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