The latest buzzword in the Healthcare IT (HIT) world is “patient-centric”. It seems that everyone’s device/software/solution is designed to be patient-centric. On the Society for Participatory Medicine’s internal listserv we discussed what does it take for an HIT system to be really patient-centric. We were wondering if a good definition of patient-centric even exists. Could we give vendors a good specification of what they should be looking for? My listmates never disappoint and we came up with quite a few links and great ideas.

Pat Mastors brought up one of Don Berwick’s speeches to the National Health Services in 2008 with a great definition:

“First, put the patient at the center—at the absolute center of your system of care…for everything that you do … It is not focus groups or surveys or token representation. It is the active presence of patients, families, and communities in the design, management, assessment, and improvement of care itself … It means equipping every patient for self-care as much as each wants. It means total transparency—broad daylight. It means that patients have their own medical records and that restricted visiting hours are eliminated. It means, ‘Nothing about me without me.’ It means that we who offer health care stop acting like hosts to patients and families, and start acting like guests in their lives.”

Vince Kuraitis sent us a nice detailed description of patient-centeredness concepts through the Group Health Cooperative’s framework for patient centered care. Here’s the article’s conclusion:

 “Although the goal of delivering an optimal patient-centered care experience may seem aspirational, the mounting pressures on health care settings make this a particularly opportune time to explore the ability of patient-centered innovations to improve care processes and health outcomes. A parallel may be drawn from the literature on improving reliability in health care. Just as each patient should reasonably expect care that is free from errors, there is every reason to set a similarly ambitious expectation that every patient will not only receive reliable and error-free care but also will consistently receive patient-centered care—in any health care setting, every time. We have the tools, the business case, and the evidence base—now we need the will.”

Getting closer to IT, Adrian Gropper MD gave us a description of what a clinician, practice and institution should do to be HIT patient-centric:

 “A patient-centered clinician will gladly let go of the patient’s own data to the patient and whatever other caregivers the patient may have. The data will be let go in cheerfully, conveniently, without delay using common standards or the patient’s preferred format. This is exceedingly rare in health care today.

A truly patient-centered practice would then be open to “if it comes back to you”. Accepting input from the patient’s care team is almost unheard-of in our system. Institutions that love us will compete freely for the right (and compensation) of being our “medical home” and curating our patient and care-team input.

Conversely, no institution or service provider that holds my data hostage can ever be patient-centered in my book regardless of the platitudes they otherwise expound.”

Finally, a great bullet-point definition easy to understand in Keith Boone’s words:

“Let’s look at what I consider to be valuable:

  1. My Health
  2. My Money
  3. My Time
  4. Access to My Information
  5. Access to other information that is pertinent to any of the above

Here’s my initial set of requirements. Patient-centric Health IT makes it possible for me:

  • [1,2] To understand how much my health issues are costing me currently, and how much it could cost me in the future.
  • [2] To understand what my costs are for different treatment options at different locations.
  • [1,2,3] To be able to compare and contrast my options for different providers with respect to availability, distance, cost, quality and effectiveness.
  • [3] To quickly and easily schedule appointments at times that are convenient for me electronically.
  • [3] To quickly and easily obtain a telehealth consultation for health issues that aren’t urgent or emergent.
  • [1,3] To quickly and easily communicate with my healthcare providers.
  • [1,2,3] To be able to coordinate my care with my healthcare providers.
  • [1,3] To quickly and easily access care for urgent and emergent issues.
  • [3] To quickly and easily fill and refill my prescriptions.
  • [4] To access my health information electronically, automatically, without any further intervention once I’ve set it up.
  • [4] To understand my health information. This could be a lab report, my health record, or any other sort of health data.
  • [5] To quickly and easily access authoritative health information.”

Many thanks to all! My listmates rock! What do you think patient-centric HIT should do?

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