This article was originally posted on www.ihealthbeat.org

Alan Blaustein

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.*

Zweena is a cloud-based Personal Health Record service provider that collects, assembles, digitizes and stores health and medical records in a secure platform connected to  Microsoft HealthVault.  The Zweena PHR is easy to access, manage and share with you health providers any time,  anywhere . Sign up today.

*This article was originally published in the HuffingtonPost on 09/11/2012.

Alan Blaustein is the founder of CarePlanners.com and is a regular contributor of the HuffingtonPost.

Well, combined with a preexisting condition often mistaken for an aesthetic problem, a UTI turned into a nightmarish complication that could’ve killed her. Let her tell you her story:

I was on a business trip and I could no longer stand the pain in my leg. I had to do something, so I went to the ER. Since I was neither bleeding nor screaming, I had to wait before a doctor could see me.

 I kept thinking about my children at home with my mother.  

I had seen a doctor earlier at a local Medical Practice who had examined my leg and decided it was nothing “major” and that “the swelling would subside gradually on its own”. See, I had a urinary tract infection, UTI as they call it, and swollen legs are not uncommon.

I don’t generally go to the doctor because I need a massage, which was basically what the doctor had suggested and something felt wrong. I couldn’t let it go, so I went to the ER that night.

I told them about the infection and the antibiotics, cephalexin, that I felt weak and had difficulty breathing. They told me it was a “normal reaction” to antibiotics; “they’re attacking the infection and the body weakens”. They told me that if the pain hadn’t subsided in a few hours they would “consider” changing them, but that I had to give it time.

 I came back still with pain in my leg and they prescribed some ibuprofen for the pain and sent me home.

The next day I was rushed into the ER again because I had collapsed and had trouble breathing.

I had a blood clot in my leg and it had started to travel to my left lung.

I could have died.

It turns out that cephalexin is a type of antibiotics often used to treat resilient UTIs, with a side effect that affects women over 50. I have varicose veins or vein insufficiency, a problem often considered aesthetic and my body reacted poorly to the antibiotics.

  I spent thousands of dollars in medical bills for the subsequent treatment to keep the blood clot from reaching my lungs and had to undergo several painful procedures that now I know, could have been avoided.

  I will never be unprepared again. I owe it to my family.

Laura Parson, Illinois.

Ms. Laura Parson, whose name we changed at her request, shared this experience as a “life-changer” adding that she felt “partly grateful” because it made her “look at [her] life through different eyes”.

Often, people only consider keeping a PHR in times of need; fortunately Mrs. Parsons’ story had a happy ending, but that is not always the case.

It’s hard for doctors to keep track of everything in the patient’s chart and sometimes information gets buried or overlooked. It is because we let others decide for us, that misinformed decisions are made, misdiagnosis issued and lives lost in the end.

A digital, web-based record, like Zweena’s allows the patient, their care-giver and physicians to quickly sort through large amounts of data which improves care quality.

A health record is simply a collection of your health information (like your dietary habits, fitness, physical abilities/status, hormonal balance, age, weight, blood pressure, etc.) and your medical records, those files that your physicians keep and update whenever you pay them a visit for a checkup, or go into the emergency room.

Here’s the thing: Medical Records are usually not available to patients and in times of need, it can be ridiculously expensive to put one together and the sad part is you may not even have the time to do that.

You, or a loved one, may run out of time. (See Regina Holiday’s personal crusade to get her husband’s records)

Why You Need a Personal Health Record

You have a right as a patient, and the obligation as proactive member of our society, to have a Personal Health Record – a collection of all of those Lab Results, X-Rays, Treatments, Prescriptions, Appointments, Weight-loss plans and Medical Records in one place.

A place that is accessible to YOU.  Because, it’s YOUR health.

You Need a Personal Health Record Because:

1. It allows you or a physician to make better health decisions in the long run.
2. It improves accurate medical response in a crisis.
3. It reduces misdiagnosis and the hazards or expenses associated to it.
4. It saves you time and money in routine checkups.
5. It reduces the number of medical appointments, by allowing a direct connection between physician and patient.
6. It enables self-monitoring, which means you can keep your own track on glucose, blood-pressure, diet, medications and more.
7. It makes care-giving for the elderly, disabled, or physically/mentally impaired easier and more effective.

It puts you as a patient, or caregiver, In Control of the health, and medical, decisions that affect you and the ones you love.

What most people fail to grasp is the fact that they usually already have a Health Record, albeit a messy one:

That’s right; usually kept in a box in the attic, or spread across various rooms and drawers you’ll find that you have several of these already:

• Lab Results: yes, the last time you had your blood work done -can you remember where that piece of paper is?
• X-Rays: that time you sprained your ankle and had some x-rays done. Did you save those?
• Vaccinations and Treatments: we often protect ourselves against what’s out there, or go under treatments for any number of passing conditions but, we hardly ever keep a record of what went down, but we should!
• Prescriptions: from allergy medicine to chronic pain prescriptions. Most people don’t even keep a copy after treatment is over with.
• Doctor Appointments: yes there’s your Google Calendar or that hefty app that reminds you of your upcoming appointments, but that’s not enough.
• Medical Records: This is The BIG one. And you may not be able to find these around your home, unless you –or a family member– changed doctors or moved and had them faxed over.

Medical Records are Key for a PHR

Every time you go to the doctor’s office, go into the emergency room, get a checkup, visit the dentist or the eye doctor- a record is produced. Those are your medical records.

The good news is: they keep it.

The bad news is that standard practice tends to leave all of this precious information in the hands of medical facilities, which means that in a crisis you won’t be able to have immediate access to it. And with all the people coming and going, bureaucracy and associated costs by the time you do, it may be too late.

Fortunately, that’s changing and the current trend is to empower patients and caregivers to keep their own records.

You can keep an organized Personal Health Record securely and efficiently online to access it anytime, anywhere with Zweena.

We know contacting doctors is complicated and that medical records comprise years of individual facts and data. Not everyone’s got the time or expertise to sort through these and organize them appropriately in order to keep a comprehensive, yet easy to access, Personal Health Record.

We facilitate this process, with the help of highly trained staff with medical background and understanding, to make that record both easy to compile and view from a secure web-based platform that we continually update and improve.

ZweenaHealth does all the work for you:

We collect the records from your various doctors, digitize them –leaving both a scanned copy and an accurate transcription of hard data-, and upload it to your ZweenaHealth account. Once your record is up, we destroy the physical copies to ensure the integrity and confidentiality of your information while you have full control of who you share it with, when to view it and more.

You can get a Personal Health Record with us, following the steps right here