How health care system fails ePatients

E-Patients actively seek health information online

As the terms “e-health” and “e-patient” entrench themselves in health care lingo, some may dismiss the growing interest in this phenomenon as a passing fad. Yet, technology is profoundly transforming not just the way in which health care is delivered but the very nature of healthcare itself.  The seminal white paper e-Patients: How They Can Help Us Heal Healthcare brilliantly argues that this change parallels the radical revolution that marked the transition from the Industrial Age to the Information Age. Automation resulted not in robots working in factories but knowledge workers using computers; in other words, beyond shifting the mode of work, technology transformed the nature of work itself. By the same token…

…bringing healthcare into the new century will not be merely a matter of automating or upgrading our existing clinical processes. We can’t just automate earlier forms of medical practice. The underlying nature of healthcare itself must change.

There is a growing acceptance that the Industrial Age paradigm, in which health professionals were revered as the exclusive locus of medical expertise, is shifting to one in which patients, families and consumer networks are increasingly viewed as important healthcare resources. It is easy to take for granted how much technology has catalyzed the meteoric rise of the e-Patient. We may overlook the now shocking reality that as recently as 1994,  Edwin Murphy ( a patient with a chronic hip problem) had to impersonate Dr. Blakely ( his physician) to obtain an article, on the risks and benefits of a proposed surgical procedure, from the hospital library. His doctor had ignored his repeated requests for the article. The internet broke down the barriers, allowing patients entry into the hallowed corridors of  medical knowledge and decisionmaking, whether or not health professionals were ready for them.

While some doctors remain rooted in Dr. Blakely’s era,  their progressive counterparts (about 22%, 2006) are embracing their patients as partners – welcoming their initiative to research their condition online, analyze their options, connect with patient communities and participate actively in their own care. However, access to health information is only one tenet of the complex entity that is health care. There is is still a lot to be done because the current system as a whole is predicated on the Industrial Age paradigm. There is a disconnect between e-Patients’ capacity to participate in their health and the system’s capability to support this. Progressive physicans who are willing to engage with their e-Patients are hampered by a healthcare system that is modelled on outdated pre-Internet medical constructs. There are abundant barriers to:

  • Physicians communicating with patients via e-mail and mobile technology on a 24/7 basis
  • Interoperability for efficient patient data exchange to optimize health outcomes and safety (see Towards Health Information Liquidity)
  • Patients obtaining access to their medical records via the Internet
  • Referring patients to online support communities
  • Involving patients in assessing the evidence and using it to inform their decisions

While cultural and institutional obstacles impede patient-physician collaboration, the reimbursement model is a particularly significant barrier to participatory medicine.  Describing the US system, Rushika Fernandopulle and his colleague Pranav Kothari state,

“In the traditional clinical practice, the insurance company comes first, the provider institution comes second, physicians come third, nonphysician staffers come fourth, and the patient comes last”

Insurance companies choose to not pay for communication via e-mail and access to electronic health records. Fernandopulle and his colleagues see the retainer-based practice model as a way to break free from the restrictive tyranny of cost-containment and to embrace a far more patient-oriented  approach to clinical care. I am sure there are other innovative health practitioners that are creatively seeking ways around systemic barriers in order to harness the potential of technology to better serve their patients.

As these isolated visionaries take the lead, the US health reform process underway is a prime opportunity to undertake the radical revolution envisaged by Tom Ferguson, MD:

“Something akin to a system upgrade in our thinking is needed-a new cultural operating system for healthcare in which e-patients can be recognized as a valuable new type of renewable resource, managing much of their own care, providing care for others, helping professionals improve the quality of their services, and participating in entirely new kinds of clinician-patient collaborations, patient-initiated research, and self-managed care.”

While this post focuses on the US situation as articulated in the ePatients White Paper, the rise of the ePatient is a global phenomenon so similar scenarios may be playing out elsewhere. Most health communication professionals are keen on addressing the barriers to e-health technologies. Your insights on how to confront these issues are most welcome. To discuss these issues with passionate e-health enthusiasts, join the weekly #hcsm Twitter conversation held on Sundays, at 8:00 pm, Central Time.

Photocredit:  http://www.piperreport.com/archives/images/Two%20Women%20at%20Desk.jpg

Explore posts in the same categories: Consumer health, E-health

2 Comments on “How health care system fails ePatients”


  1. people need to go to hospitals regularly. the e-med alonecannot be sufficient.

    • shebamuturi Says:

      I appreciate your comment. I agree with you that the ePatient needs to work with their physician in a collaborative relationship. In fact, the ePatient White Paper identified diagnosis as an area where patients said they need their doctors’ input. The notion of the ePatient challenges the assumption that the doctor knows everything and recognizes the role of the patient as a partner in informed decision-making. My contention here is that the health care system fails to support the ePatient as a valuable partner in their health care. The ePatient White Paper gives examples of patients with rare diseases who have researched their condition, located other patient communities and shared valuable information with their physician. This post makes the excellent point that many barriers constrain online care and physician-patient interaction.


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