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Consumer Access to Health Care Information and the ONC: An Acronym at Work

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The Office of the National Coordinator for Health Information Technology of the Department of Health and Human Services (say that 10 times fast...) held its 2012 Consumer Health IT Summit in Washington, D.C. this past Monday. The topic was the continuing effort to advance consumer access to health information.

Just a really quick aside -- the ONC is driven by Dr. Farzad Mostashari (National Coordinator for Health IT, ONC) and his staff, under the guidance of Todd Park (the U.S. CTO). This team is the epitome of what you want your government representatives to be -- progressive, open, transparent, collaborative and in pursuit of a common goal actively and consistently seeking input from both the public and private sectors. Their goal is to quickly acknowledge the issue and work hard together to find the solution. The energy of the summit was reflective of the positivity of Farzad and his team. If we all worked with the attitude of this team, the world would be a far better place and progress on all fronts would be accelerated.

OK, now back to our regularly scheduled broadcast. The focus of the summit was on the continuing effort to make health information more easily available to consumers and to engage them in using their data to improve their care and wellbeing. In particular, ONC highlighted three elements that are needed to succeed in these efforts:

  • Access -- getting information into the patients' and caregivers' hands;
  • Action -- engaging consumers to use the information in an effort to gain better health; and
  • Attitudes -- how access and action helps shift attitudes about the traditional role of patients and providers and the role technology can play in empowering patients to be more engaged partners in care.

The question of access is one on which I think we're all finding some consensus. It is common sense that we should have access to our own health care information (it's a legislated right, as well). As I've written earlier, we all have as many personal health records as we do physicians, facilities and conditions. In my case, four doctors at three institutions focusing on two conditions left me with upwards of 24 personal health records.

Think of these records as the unauthorized biographies written about your life. While you have the greatest vested interest in making sure in making sure the information is correct, somehow you've been left out of the creation or safekeeping of your record. Our health care records are an important part of the story of our lives -- so providing access to your information only seems right so that the owner of the body and soul also owns the story.

The question of attitudes is to me more a question of accountability. To get there, we first have to figure out what everyone's role is and then have all of the players assume the proper role. What is the patient's job? What is the provider's role? Who else needs to play a role? And given that every patient and provider relationship is different, will one size fit all? This will evolve over time, and the speed of this evolution is directly correlated to to the third "A" in the equation -- action.

Action is where the action is. It is also where the biggest challenges exist today. We can theoretically discuss the time when the information system is seamless and we all have one record somewhere in the ether, when consumers of all kinds have the ability to access their information and where everyone understands their roles. That's simply not the reality of today.

Let's assume you can get access to your many personal health records. Then what? I'm supposed to understand that information, consolidate the information, interpret that information, question inconsistencies in the information, and take action on that information? I'm an educated consumer, but I'm not a consumer educated in understanding the health care system. Very few of us are. Have you ever gone to a foreign country and tried to make sense the map? Have you ever done so under the additional stress of being a patient or a caregiver where a wrong turn can be a doozy?

Today we all need help organizing this information, and then navigating and coordinating the health care needs of ourselves and our loved ones. You can say technology will solve all of this -- but how is technology going to make sense of inconsistencies in your personal health records? How is technology going to understand your needs and preferences as you try to make decisions as you navigate and coordinate? The answer is that technology alone isn't the solution -- until you show me an algorithm for the health care system, you need a human element involved.

So if a human element needs to be involved, who should it be? Is it the patient or the caregiver? They're already busy trying to figure out the system during difficult circumstances. Should it be the provider or someone in her office? It probably should be, but that's just not how the system is set up today. The provider has limited time with the patient already and limited resources to hire a whole crew of navigators. Should it be the insurance company? Too many questions of consumer trust. If it's not the patient or the caregiver, or the provider, it has to be a qualified individual whose job it is to help patients and caregivers keep organized and on track through the process (using technology to facilitate efficient interactions).

These navigators, advocates and careplanners are what lead patients and caregivers to action. And as time moves forward, patients and caregivers can become more comfortable with the terminology and the technologies. And as that happens, attitudes shift as everyone better understands their individual role.

There's one more point to be made regarding action. Action is defined by audience. Clear articulation of who the audience is drives the action involved. For instance, in conversations in the health care space and at the summit, you often hear the terms "consumer," "patient," and "caregiver" used interchangeably. They're not the same thing and they are seeking out different actions.

A consumer is often someone who is not presently being confronted by a health care challenge. For them, a prescription refill app might be sufficient to fill their health care needs and close the "access, action and attitude" loop. This consumer is fine using the health care system on an episodic basis, so apps alone might be the solution.

For the patient currently dealing with the health care system, having access to their right singular personal health record is vital. For the patient, having someone at the other end of the phone who can help them get from point A to point B is important. For the patient, the action is making sure everyone is informed and the patient is best educated so that the patient can play a role in her health care. The patient needs more than an app to do this.

And for the caregiver, it's about having the information when and how they need it. In addition to the right personal health record, the caregiver cares to know the 10 numbers he or she would need to call. For the caregiver, the action is making sure they're organized at all times. And "at all times" implies a lifelong relationship with the system that sees both times of crisis and times of organizing to avert any oncoming crisis.

With the right set of actions for the right audiences based on the right access, attitudes will evolve and accountability will be achieved. It's going to take a lot more conversations like the one the summit promoted, but these discussions are a step in the right direction.

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