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read personal stories from other members of the imPatient Movement.

Tom is imPatient…
New Haven, IN

A retired factory worker, Tom is defying the stereotypes of his demographic by actively engaging with electronic health management tools…

Tom’s story…

Tom Diehl retired “early” at age 65, not out of desire but due to a growing list of health concerns. Atrial fibrillation. Kidney problems. Mitral valve cord repair and triple bypass surgery in late 2009, and two years later, a pacemaker to help regulate his arrhythmia.

Today, he’s added another technology tool to the mix – an electronic personal health record he uses to track and monitor his own health.

Early signs of trouble ahead

Tom was 6’4” and 290 pounds the day he started high school. He was also already suffering from hypertension. “I always had trouble passing the physical for sports because of my blood pressure. By today’s standards, and even by the standards 50-plus years ago, I would have been considered obese, but I never felt that way. I was just a big farm kid,” he says.

For Tom, like so many others, weight management became a lifelong challenge.

“Growing up, we were all exposed to cigarettes and alcohol, and I knew smoking and drinking and even eating could shorten my life. I had a lot of things I wanted to do, and I knew the one I enjoyed most was eating, so I gave up the other two,” Tom says.

Life goes on

As a young and then not-so-young adult, Tom navigated through life while his health rode quietly along in the back seat. Now married more than 42 years, Tom and his wife raised six children and enjoyed active participation in church. Tom worked 30 years in a rubber factory, and the last 16 years selling cars. His wife was a nurse.

Typical of the times, Tom took care of the family finances; his wife served as the family medical director. “It used to be if someone asked me what kind of medicine I take, I’d just look at her. Not only could I not pronounce it, I wouldn’t even know what it was,” Tom remembers.

But all that has changed.

Taking control

In 2011, Tom was invited to participate in a pilot program available through Parkview Physicians Group – Cardiology (PPCG). Funded through a grant from the Office of the National Coordinator of Health IT, the program provided patients like Tom with an electronic personal health record they would use to compile, organize and share health information with their healthcare providers. The program goals: improved communication between patients and providers, and improved outcomes as patients began taking a more active role in their own health.

“When I heard about the program, my first reaction was ‘Well, if it could benefit someone else, I would do it’. That was my main motivation,” Tom says. “But I also saw how taking control over my own health would be beneficial. For years I had been encouraged to weigh myself everyday and take my vitals. Now I had a way to log all that information without writing it on a piece of paper on the wall and then having to wonder where the grandchildren put it.”

Program mechanics

Participants in the program (all of whom had recently undergone cardiac bypass or stent surgeries) were given NoMoreClipboard personal health record (PHR) accounts, pre-populated with data from PPGC’s electronic medical record system. The patients had baseline lab testing to establish weight, blood pressure, lipid and HbA1c levels. They also completed surveys to measure patient engagement and comfort using technology. Finally, participants were trained on how to use their PHRs.

PPCG repeated the survey and lab tests at six months and 12 months, measuring changes in patient behavior and health status.

Overcoming the first challenge: confidence

When it came to using the computer, lack of confidence was not an issue for Tom, but he knew it would be for others in his generation.

He explains, “People that are my age or a little older, they don’t navigate the internet much or use computers. It’s just not part of their lives.”

While his career in auto sales required Tom to use computers to research and store information, he used his home computer mainly for emailing and keeping in touch with family and friends. In fact, he says his biggest contribution to the family’s move into the digital age back in 1989 was picking the family’s email address – therealdiehl – one they still use today.

Using the computer to help with his health seemed like a good idea, especially since it was something he could do during his “recliner time” – required periods of rest with his feet elevated.

He recognizes the irony – that people his kids’ age don’3t see health issues as a big part of their lives today, but they use computers for everything. The people who do have ongoing health issues have little training with online tools, and they’re intimidated. But Tom is optimistic and says that with an hour of training, he believes many people would know enough to begin using a PHR.

Starting small

Tom began logging into his PHR to track daily vitals – his blood pressure, weight and pulse. He entered his allergies and a list of his medications, plus a list of all the doctors he sees. Over time, he started working on his family medical history, immunizations and a list of the procedures he’d had done, and he found himself feeling more involved than ever in his own health.

He says, “There is so much you can put in this system so people don’t have to be so naive or ignorant. If they have any kind of health challenge, they can keep all the information organized here. Today, when I go to the doctor’s office, I can take a print out from my PHR, go down the list and confirm and recognize things. It’s allowed me to educate myself and report information from my doctor that I documented so they can see where I struggled.”

Three wishes

Now that Tom’s actively using his PHR, he wishes more of his doctors would get on board. His NoMoreClipboard account is designed to interface with whatever system a doctor is using, but he’s run into trouble convincing the front desk at several practices that they can share information electronically.

“My PHR lets me fill out all the pre-registration information I need for an appointment, but when I try to submit it to a doctor who’s not in the Parkview system, they won’t take it,” Tom says.

Another frustration for Tom, because he’s an early adopter of this technology, is that the medical community doesn’t automatically push electronic information to his account.yet. “I wish I wouldn’t have to remember to ask them to send a summary of my appointment or my lab results,” he says.

Finally, convinced that others would experience the same value that he has, Tom wishes people would just give it a try. “I probably know 30-40 families right now and I bet at least ten of them could do everything I’m doing with my PHR,” Tom says. “I’ve worked with the PHR now for almost two years and it really does help you take control of your own health.”

Tim is imPatient…
Rowlett, TX

A major move, a required surgery, and untimely access to necessary medical records had Tim concerned about his wife’s safety…

Tim’s story…

My wife needed major surgery, and spent about 6 months under the care of a physician in a major metropolitan area. When we moved to another major metropolitan area and then chose another doctor to perform the surgery, the surgeon wanted all the records from the previous doctors.

It took weeks of signing consents, faxing information, phone calls and requests before getting the requested records/information from the previous doctor. Even with all that, an MRI that the surgeon needed to see pre-op was not included with the records they sent.

The requested MRI did not make it to the doctor before surgery, forcing him to operate without the benefit of obtaining all information needed.

Thankfully, she is healing well, but at our next appointment, you can bet I’ll be discussing electronic medical records exchange with her doctor. Medical history should not be a burden to share when that patient wants it shared!

Our experience made me imPatient for sure! We’re ready to start talking about creating our own PHRs, even though we hope we won’t have another situation like this one where we really needed them.

Rachel is imPatient…
Chicago, IL

Rachel is vibrant young wife and Public Relations professional whose outside appearance belies the chronic health conditions she deals with on the inside.

Rachel’s story…

While I would like to think that I look like a very healthy adult from the outside, I deal with several chronic health conditions. I currently work with seven different specialists in four different locations and three separate health systems. In addition to my hometown doctors in Chicago, I am also under the care of one of the top neurosurgeons in the US, based in Boston, MA.

Thankfully, my conditions do not interfere with my daily life, for which I am very grateful to my doctors, but I do encounter regular frustrations with the healthcare system in regards to provider communication and the delivery of healthcare results and information.

Unfortunately, healthcare is seemingly one of the last industries to utilize electronic record keeping and communication, thus making the management of my healthcare a full-time, second job. On a regular basis, I am required to spend my time and energy dealing with:

  • Repetitive paperwork. I consistently fill out the same paperwork each and every time I see the doctor. I cannot even tell you how frustrating it is to sit in the waiting room and fill out the same form for every doctor, every time I see one. Can't I just fill out one standardized form and bring it in with me so I don't waste my time and my doctor's time sitting in the waiting room? I work with healthcare IT clients and I know there's an easier way. What's taking my doctors so long to catch on?
  • Lack of provider communication. Many physician offices will ask what doctors should receive copies of your medical files. However, over 30 years of going to various specialists, I can honestly say that not one of my physicians has proactively sent copies of my medical summaries or labs to my other doctors unless I actively oversee the process. Shouldn't this just be an automatic process? Because it's not, I need to bring in a stack of hard copy files so every physician has a big-picture look at my healthcare situation at that time. You can only imagine the amount of time it takes to explain to each doctor what has happened with my other doctors since I last saw them, wasting my time, my physician's time and the other patients sitting in the waiting room. Plus, it makes me feel lost…not one of my doctors has a 100 percent, clear picture of what's going on with me.
  • Medical record transmission and financial strains. Since providers are not consistently sending copies of my records to other doctors, I manage this process on my own. I try to mail or fax copies of medical records to all of my doctors each time I have new lab work done. The great majority of these files are lost in transmission, mis-filed or don't make it to the physician at all. Getting my MRI images from the lab here in Chicago to my neurosurgeon in Boston is even more problematic. I have MRIs every six months and each time, I need to fill out the same form giving the hospital approval to send my MRI. This form generally takes two to five days to process, so at this point, I need to pay an $18 overnight fee to get the package to the surgeon before our consult call. All the while, I am just hoping that nothing serious is wrong because my surgeon won't know about it for another week due to this exhausting process. I have also started to request copies of my MRI images for myself and in order for my hospital to send medical files to a patient, an insurance company or law firm (according to Illinois state law) my hospital charges me an additional $20 processing fee each time.
  • Electronic systems that don't talk to each other. All of my doctors except one have some sort of electronic records system, but they only hold information from the last time I saw them. It is never a complete, big picture record of my health. If I were not actively monitoring my situation, many of my tests and labs would be repeated. At a recent appointment, my OB-GYN wanted to check my prolactin hormone level because according to his computer, the last time I saw him, it was off. However, my endocrinologist had just checked this hormone the week before as part of my six-month check-up. I stepped in and showed my OB-GYN a hard copy of these lab results so we didn't have to repeat the test. If each of their computers could talk to one another, they would have known this.

    Three of my specialists are within the same health system and they all have access to one another's files, electronically. The integrated care I receive from these three physicians makes them my favorite doctors to see. I'm in and out of my appointments, they all check the computers before coming into the exam room and we can have a productive conversation because they know what's been going on with my other two doctors. Plus, lab work is never repeated. I also actually feel like I'm being cared for and that everything is under control.

  • Patient portals I can't do anything with. The three specialists within the same health system also have a patient portal. These portals are great because after each appointment, I receive an electronic summary of our discussion, next steps and all lab results. The portal also maintains a list of my upcoming appointments. I will give them credit because they do seem to be ahead of the curve. However, these “patient” portals are controlled by the physician. I cannot e-mail them back, I cannot send the records to other doctors and I cannot even download a PDF version of the files. Instead, I have to print them out, scan them and send them to my other doctors the old-school way – by fax or mail. I also cannot use this portal to upload records or data from other doctors, or make my own notes. As a “patient” portal, I want to do more with this, but am limited.

I have learned to become an advocate for my own health, but it is exhausting. My health conditions rarely make me cry, but I have certainly shed a few tears over the lack of provider communication, the huge weight I carry in trying to manage all of my doctors and the fact that there is not one doctor (no matter how caring or wonderful they are) that is really in charge, or knows my full history at any given time. That is scary to me. There has to be a better way. A better way to improve communication, and a better way to improve patient care and reduce costs…for the industry, for the patient and – yes – for me.

Barbara is imPatient…
Rockton, IL

At 87, Barbara jokes that more and more of the contacts in her address book are ending in “ist”...

Barbara’s story…

When Barbara sits down at her kitchen table to begin organizing her call list and her calendar, she finds herself juggling appointments with her internist, physical therapist, ophthalmologist and the radiologist. While many are part of her city's largest hospital system, she feels as though none of them communicate very well, especially with her.

When the hospital started reporting test results with an online portal, she diligently created her account, but has found the process of using it to be anything but easy. Her biggest frustration is the inability to move information from that system to her own Personal Health Record – the tool she's trying to use to manage information that comes from doctors outside the hospital network.

Without a universally accepted platform for sharing medical information, Barbara is forced to advocate for herself by “being the squeaky wheel.” At doctor appointments, she's the one to point out that the labs and other diagnostic tests being ordered have recently been done by another doctor. But unless that doctor is part of the same system, it's difficult to access the reports.

Her adult children, both hundreds of miles away, worry about the collection of medications she takes…and if all of her doctors are aware of what has been prescribed by someone else. Precious time during visits and get-togethers is now carved away for sorting through the masses of information she receives, and learning whatever new electronic system she's being required to use by her various providers.

Barbara just wishes everyone would look at the same set of information, which seems reasonable considering that it's all electronic and available from anywhere. She wants her family to be able to see her records as well. She doesn't mind having to do everything on the computer – she got an iPad last Mother's Day and likes using that.

She knows that communication would improve the care she receives and reduce the costs of repeating tests. Her doctors agree. But right now, with everyone using their own systems, nobody seems to know how to make it happen.

A call to action in pursuit of improved electronic health record sharing and open communication between patients and medical professionals

NEW ORLEANS – March 4, 2013 – To promote improved electronic health information exchange between consumers and clinicians, key health IT leaders have partnered to launch the imPatient Movement. The movement was introduced today at HIMSS13 in New Orleans and will work to empower patients, healthcare providers and health IT organizations to collaborate and advocate for swift and meaningful action in making electronic health information accessible, interoperable and actionable. The movement also supports meaningful use stage two criteria that will require health care providers to more actively engage patients by providing them with the capability to electronically view, download, and transmit relevant information from their provider’s electronic health records to a designated holding place.

The imPatient Movement was formed by an independent coalition of health information technology providers, healthcare professionals and organizations, including NoMoreClipboard, Microsoft HealthVault and Indiana Health Information Technology, Inc.

“We’re excited to see these organizations teaming up to fulfill their Blue Button Pledge through outreach and engagement. The imPatient campaign recognizes what we firmly believe — that both patient and provider attitudes must change in order to achieve the full potential of eHealth, and that both parties will benefit from having greater access to and use of electronic health data,” said Farzad Mostashari, National Coordinator, Office of the National Coordinator for Health Information Technology, part of the Department of Health and Human Services.

“The genesis of the imPatient Movement was feedback from frustrated consumers who took the time to create a personal health record, only to be handed an old-fashioned clipboard and directed to fill out the registration forms,” said NoMoreClipboard president Jeff Donnell. “At the same time, those on the provider side have questions and concerns about electronic patient engagement. The imPatient Movement was created to help consumers and clinicians engage in meaningful dialog about the value of sharing data electronically.”

I’m imPatient. My health depends on IT

“In our state, we are hearing from residents who are growing impatient with their inability to access, manage and share their health information with a tool of their choosing,” added Andrew VanZee, Indiana’s statewide Health IT Director. “Providers are also impatient with the lack of patient engagement solutions that will help them satisfy meaningful use requirements and foster patient loyalty without disrupting workflow. We see the imPatient Movement as a way to create meaningful, electronic relationships and avoid adversarial ones.”

“The imPatient Movement is committed to providing platforms and tools that will empower patients to take a more active role in their health and also make healthcare providers comfortable with patients being at the center of their own care,” Donnell continued.

Join the Movement

All patients, caregivers, family members, healthcare organizations and providers are invited to “find your voice and join us in telling others that you’re ‘imPatiently’ in pursuit of improved communication and better health.” Visit imPatient at www.impatientmovement.org.

The imPatient website invites visitors to join the Movement and take action in one (or all) of the following ways:

  • Share personal experiences and opinions via the movement’s online blog community
  • Read about experiences, aspirations and ideas from other members – including consumers and clinicians who are working to connect electronically
  • Sign up for e-mail alerts and receive ongoing updates about patient engagement, personal stories from patients and providers, as well as opinion pieces surrounding healthcare IT policies and standards
  • Follow the movement on Facebook and Twitter social media channels

“HealthVault is all about empowering real people with the information and tools they need to become active participants in their care,” said Sean Nolan, Chief Architect of Microsoft HealthVault. “We’re excited to be part of the imPatient Movement to help foster a dialogue between patients and their healthcare providers about the importance of working together — because true collaboration is the real key to improving outcomes and reducing costs.”

To find us at HIMSS13 to learn more or to become part of the movement, visit us at Booth #1340. Or visit us online at www.impatientmovement.org.

About the impatient Movement

The imPatient Movement was formed by an independent coalition of health information technology providers, healthcare professionals and patients dedicated to improving patient / provider communication through the use of portable electronic information exchange. It is a call to call to action for patients and medical professionals who support open communication and electronic medical health record sharing.

Healthcare IT News  /  March 29, 2013
Q&A: The imPatient Movement
Healthcare Scene.com  /  March 5, 2013
Health IT Leaders Partner to Launch imPatient Movement
Healthcare Technology Online  /  March 4, 2013
Health IT Leaders Partner To Launch imPatient Movement

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