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:
- My Health
- My Money
- My Time
- Access to My Information
- 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.
-  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.
-  To quickly and easily schedule appointments at times that are convenient for me electronically.
-  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.
-  To quickly and easily fill and refill my prescriptions.
-  To access my health information electronically, automatically, without any further intervention once I’ve set it up.
-  To understand my health information. This could be a lab report, my health record, or any other sort of health data.
-  To quickly and easily access authoritative health information.”
Many thanks to all! My listmates rock! What do you think patient-centric HIT should do?
Patient-centric care is not complicated. It is the integration of the patient (patient’s familly and caregivers) as full partners in their health-care team. This means the patients have an equal voice in treatment decisions and care choices and full access to their health information.
The biggest obstacle to patient-centric care today is the willingness of the average patient to take such an active role in their care. So the key question is how to educate and arouse patient populations so they understand and participate. The role of HIT is to provide easy-to-use tools to help make this happen.
Hi Nancy. Engaging the average patient is a big problem indeed. But I think we do not have good tools for the engaged patient yet. We probably should make the tools work well for the engaged before expecting the average patient to use them.
There are a number of issues that are obstacles to real patient centered care and each of them can be traced back to how we in this country at least pay for health care.
Keith Boone considers the following to be valuable:
1. My Health
2. My Money
3. My Time
4. Access to my information
5. Access to information pertaining to the [previous 4]
The big flag that first grabs my attention is the 2nd item “My Money” – Except for private pay patients this simply isn’t true at all. For anyone who doesn’t shoulder the whole cost of health care (which is most of us reading these words) we are insulated and don’t have a clue what the cost of our care or the care those of us who are providing care is. Our companies contribute well over half the cost of insurance, our co-pays are only a fraction of the cost of visits, medications, services. As a result there are very few of us that can afford the retail price of just about anything anymore. If we were to suddenly go to a true free market system I suspect 80% of hospitals, clinics, imaging services and labs would go out of business. Those that would survive would have to cut the costs of their services well below the maintenance fee for whatever they use and where they provide those services.
The second thing that sticks out like a sore thumb is “My Health.” As much as we’d like to think our health is really our health it’s not. It never was. Our health is a product of our social interactions; the trillions of bacteria, fungi and viruses that live on, in and around us; our own genes; and our collective behavior. No individual is an island and everyone is always impacting other people’s health. So it’s a group thing … and not only a human thing. Those who do not take advantages of immunizations are in the same category as those who smoke around others or drive while drinking.
Then comes the time issue. Each of us has a limited time on this planet before we go on. Until we learn how to manage time this is a zero sum game. Not taking time off to improve our health or taking time off to treat a condition means paying time in some other activity. There are things we can do to improve the efficiency of most interactions and asynchronous communication and treatment will play a huge role in this … but maybe at the expense of spending more time at work infecting coworkers or some other condition. A lot of thought has to be put into what “My Time” really is.
Each person is usually unaware of the effect of their behavior or other people’s time. A great example is physician’s complaint about how long it takes to do computerized order entry and looks back wistfully at the days when they could bark out “need a chest” and go about doing something else totally oblivious at all of the discrete information the nurse, radiology tech, radiologist needed to adequately execute that simple task. Now the physician has to do more but each downstream person has more information so the additional 45 seconds to complete an computerized order may save the system 45 minutes and improve the accuracy of the product.
The only two things in Boone’s needs that really are easy to do are the transparency and tools. The only problem right now with these are:
* many regulations prevent transparency.
* conflicting privacy responsibilities
* is the patient willing to contribute to the cost of the IT infrastructure needed?
Nothing is as simple as it seems and everyone thinks they can get something for free without impacting a whole community.