“I Have a Sense of Urgency Like Never Before”

When Laura Adams went in for her annual physical, she never expected the turn her life was about to take. Laura entered a medical labyrinth – a barrage of tests at six different facilities – to confirm her diagnosis of breast cancer. Laura’s professional life involves her deeply in the effort to transform health care via information technology, and now she was in a unique position to bring a patient’s perspective to that effort. In the midst of her own medical crisis – just a few days before surgery – she took the time to talk about her breast cancer journey and her perspectives on health IT at a meeting of fellow leaders in the health IT movement.

Laura AdamsFirst of all, what I have to say is not about my phenomenal medical team. They are saving my life at this very moment. I just want to talk about the problems with the systemabout something that affects us all.

I’d Love to Know What EHR My Cat’s Vet Uses

Like many people who are basically healthy, I started my own little personal health record years ago with a Microsoft grid, where I dutifully keep track of my physicals, mammograms, pap smears, cholesterol readings. I have total control over it. But nobody reminds me about checkups. I do it myself. My cat gets more health care screening notices than I doSnicky’s vet is very diligent, and I would love to know what EHR he is using.

The Breast Cancer Journey Begins

It’s quite a little drive to my primary care physician’s officemore than an hour, but he’s been my doctor for more than a decade. I’m there for my annual physical, and while he is doing the breast exam I’m thinking I cannot wait to get this overmaybe I’ll stop at my favorite restaurant on the way back. Then he says, “What’s this?” I’m thinking, well, that would be my right breast, what’s your point? He said he felt a mass, was pretty sure it was a cyst, but suggested I move up my mammogram anyway. It was scheduled for three weeks away, but I said, “Sure, OK.”

So, now I have a record in facility number one of this journey. And I should mention that even though I have been going to this doctor for 13 years, every time I come in, the visit begins as if they’ve just met me – I have to provide medical history information over and over. But when you’re healthy and there isn’t that much information, it doesn’t seem like such a big deal. I just did it.

I go to my community hospital in suburban Boston for my mammogram. I’m worried, because I’m in the waiting area for people who are being scanned for something serious. I get called back for several views. Now I’m really worried, because all of these additional views are for the left breast, not the right one with the mass. It’s nerve wracking. The radiologist sends me to the ultrasound room. Meanwhile, of course, I’m generating all sorts of health records at this facility. Then they do a needle biopsy, and when I ask, the physician tells me he thinks there’s about a 95 percent chance I’ll get a diagnosis of cancer tomorrow. I go home and manage to convince myself I’ll be in the lucky 5 percent.

The Longest Drive

I go to work the next day and step out of a business meeting to take the hospital’s call. Yep, it’s breast cancer, and it’s invasive. I call my mother, but can’t even say the “c” word. I tell her that I “didn’t dodge the bullet this time.” She finally deciphers the message that I have cancer. We both cry. I go back into the meeting and tell a close physician colleague who looks stricken and then just holds me. I headed back to my office to tell my senior staff. My life has just turned upside down. I have this diagnosis, and I start out by telling them I’m about to become a whole lot better advocate for our work and improving care for patients. You can’t sit through enough patient focus groups to understand patient care they way I’m about to understand it. I try to make light of it, you know: “The Red Sox’s season is tanking anyway, so I don’t have anything to live for!” We all laugh nervously, but gratefully for the lifting of the mood, even if just for a few moments. Then I drive home to tell my 12-year-old son. It was the longest drive. I know the only promise I can make to him is that I’ll never withhold information from him. I’ll tell him everything so that he won’t have to wonder if his world is about to shatter and everyone knows it but him. I want to lower his anxiety so he can carry on.

Panic in the Parking Garage: Where Is My MRI Disc?

Next step in the breast cancer journey is another MRI at the community hospital. Then I’m scheduled to see the breast cancer surgeon and medical oncologist in Boston. After the MRI, while still at the hospital, I get a call telling me to have all my records ready so I can bring them with me. That’s a whole lot of stuff by now. I’m building a health information exchange! I shouldn’t have to carry any records. The irony was almost too much. I felt as if the universe was trying to convince me of the importance of HIEs (health information exchanges), when I was already a believer! The thought went through my head that people should recognize that everything that has anything to do with me should be electronic. All true, but I still have to wait two hours for them to copy my records, and I walk out of there with huge radiology packets, paper records, and a little disc with my MRI.

I get to the cancer center the next morning, so they can tell me my chances of surviving and reveal as much as they can about the battle I’m about to face. I am in the parking garage with all my records, and I’m frantic trying to think if I have everything. I have cancer. I don’t have time to worry whether I have this package or that document! I look down, and I cannot find the MRI disc. It has fallen out of the packet. I look down and am shocked to realize that I have to retrieve it from behind the rear tire of my car.

I Have Completely Lost Control of My Personal Health Record

At the cancer center, the third facility in my breast cancer journey, I fill out a lengthy document. I’m leaving lots of data there. On the mammograms, they see lesions behind my left breast near the back of my chest wall, so I’m then scheduled to go to yet another facility for a stereotactic biopsy of the left breast. I now have data in four places, and I have completely lost control of my personal health record. I don’t know who has what, only that I don’t have the records. I do know that the HR receptor status result is important, because negative probably means chemo and positive may not. I am desperate to know who has that record. Where is it – was it the physician who did my initial biopsy at the community hospital? The cancer surgeon? The medical oncologist? The pathologist? I’m frantic. Am I really supposed to run around and upload my own data? That worked for me before, but it sure doesn’t work now when I’m preoccupied with other things like trying to figure out what body parts to have removed and what to keep. You can’t fight for your life and worry about uploading your medical record at the same time: It has to transport.

It’s a holiday, and they tell me I have to wait four-five days for the stereotactic biopsy test resultsthey’ll let me know on Tuesday. By Tuesday evening, nobody has called. I call because I can’t stand the feeling of terror any longer. These are my results. I should be able to have a portal where I can just find out yes-or-no as soon as they knowor at least that the results are back and I can call someone to go over them with me if that’s appropriate for the diagnosis. Do they have any idea what these days have been like for me? For my family? Well, the results are inconclusiveI’ll need a surgical biopsy of the left breast.

Meanwhile, I’m doing a “silver linings” list with my son, to keep his spirits up. He feels guilty that my mother and his cousin flew out from Colorado when I was diagnosed, so we added that to the list of good things to come out of this diagnosis. He gets focused on the silver linings list and soon, it grows. We’re thinking I can put all the co-pays and parking charges on my credit card for the frequent flyer miles! One day, he sees I have mail from the Make A Wish Foundation. He looks horrified. He knows they give last wishes to children who are dying. I think he believed they were going to send me to Disneyland one last time. I say, “Oh no, honey, we’ve given before, and they just want us to send some more money.” It’s a reminder to keep sharing information with my family. I wish they all could have access to a personal health record for me, so it would be easier to share what’s going on.

Facility Number Five: More Paperwork, and What About My Advanced Directive?

The surgical biopsy occurs in yet another facilitynumber five in my breast cancer journey. I’ve had to fill out the same paperwork at every single place. It is making me furious, because I know it’s cutting into the time I have with my care team.

In the pre-op paperwork, I’m reminded to bring my advance directive. I make a note of this, because I have strong preferences about not bankrupting my family should the unthinkable happen. I manage to remember to bring the document to the hospital, tucked away in an envelope in my purse. Just as the anesthesiologist begins to inject the drugs that will put me under for the surgical biopsy, my mind flashes to the envelope – which is still in the envelope in my purse – which is locked in a cubby somewhere and no one knows about it. Now, there’s something we can do with our health IT. We can upload advanced directives, so the information is available anywhere, anytime. As much as it meant to me to give clear direction to the surgery team about my wishes when the pre-op process began, l lost it in the worry about what they’d find inside my chest.

The results of the surgical biopsy come back. Finally, I find out I am cancer-free on the left side. You can’t imagine the relief.

Facility Number Six: More Time with Paperwork: Less Time with the Physician?

I’m scheduled to see my reconstructive plastic surgeon at yet another suburban community hospital. My appointment has been moved up because the reconstructive surgeon must be doing an emergency surgery that morning. I’m told they will squeeze me in early. I agree, since I need answers. But I worry that I won’t have sufficient time to discuss my options.

I arrive and am asked to fill out a multi-page form with the same information I’ve filled out at the other five facilities. I’m incredibly frustrated by now and worried that I’m eating into time with this new surgeon, whom I’ve never met. In the section that asks about family history of cancer, rather than painstakingly recording the history that I’ve recorded multiple times already, I simply scrawl YES in huge letters across the page. I feel guilty, knowing that this doesn’t help my care team, but can’t bring myself to waste any more precious time on paperwork. Once in the exam room, my reconstructive surgeon treated me as if I were the only patient in his practice. I left thinking that if we could get the records electronic, this would be the health care that people deserve.

Confusion at Pre-Op

Fast forward to pre-op. My left breast is safe, but my right breast has just three days to live. I am back to facility number four, and they want to do another pre-op EKG, lab work. I say, “No, no, we just had this at one of the facilities in your systemit was normal, so please look for those records and don’t do it again.” They try to find the results, but end up repeating it all. I am so angry at this point. Just think of the waste.

The pre-op, expected to be complete in two hours, takes nearly five hours. The woman who is inputting my data is chatting with me, and she mentions that I’m fortunate because I won’t be lopsided, because I’m having both breasts removed. I sit there momentarily stunned. I say no, I’m not having a double mastectomy. She says yes you are, it’s right here in the computer. It came from this piece of paper we received. I’m horrified. This has now been entered into the system, and it is wrong, wrong, wrong. If there were one, continuous electronic record, I could look at it and confirm that everything is accurate. Am I going to have to write on my left side with a magic marker to make sure that my healthy breast isn’t removed?

The Big Picture: Paying It Forward 

In signing my consents for the surgery, I think of all the women who have gone before me on their own breast cancer journeyincredibly brave women. I think of what we can do with all the data we’re gatheringresearchlike what’s been done with childhood leukemia. If we have the data electronically and pool more of it, there’s greater opportunity for real-time research. I sign a form that says they can use all my tissue, all my datathey can have anything they want, except my left breast, of course. Absolutely, I want to be part of the research. I want to pay it forward.

A New Sense of Urgency About Health IT

Those of you who know me know I am incredibly passionate about health IT. I didn’t think it was possible to be more passionate, but now I am. You would be too if it were you, your wife, your mother, your daughter, your sister. We need to get this done. Don Berwick (former Administrator, Centers for Medicare & Medicaid Services) once said that the quality of health care would be far better and the hazards far fewer if we, like pilots, we’re passengers on our own airplanes. Well, we have to remember that we are, and so are our families.

Post-Script

My right-sided mastectomy was flawless and now onto the more than nine months of reconstruction. There was only the “little remaining issue” of whether the cancer had spread. The sentinel node biopsy, which was done during the surgery, came back clean – no evidence of spread of the cancer. However, it needed to be confirmed through additional examination. A clean node during surgery signaled that there was about an 80 percent chance that the cancer hadn’t spread. But, I had to wait for the final pathology report to confirm that the cancer wasn’t coursing through my body – there was still a one in five chance that it was. I was told I’d be called as soon as the results were available.

After three weeks had passed since my surgery and still no pathology results, I could wait no longer. I began burning up the phone lines to ask why the results weren’t back yet. I received incredibly good news that they were indeed back and that I’m cancer-free. But, I also discovered that the results had been available for 11 days. Again – an HIE would have allowed me to monitor the return of that report. Even if I wasn’t able to see the results themselves through the portal, I could have called that day. Then, instead of directing my energy toward trying to control my anxiety for those 11 days, I could have directed it toward healing.

Laura Adams is President & CEO of the Rhode Island Quality Institute, which is part of the ONC’s Beacon Community, Regional Extension Center, and State Health Information Exchange programs. It is the only organization in the nation to receive awards from all three of these programs.

Laura Adams’ Breast Cancer Journey: Revealing the Importance of EHRs was originally published on HealthIT.Gov.

 

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2 Responses to “Laura Adams’ breast cancer journey: Revealing the importance of EHRs”

  1. Mighty Casey Says:

    Welcome to the club that no one wants a membership card to: the Breast Cancer Warriors.

    Your journey was fairly typical, particularly in the lather/rinse/repeat/repeat/repeat/repeat of paperwork and testing. How crazy is it that billions-with-a-B dollars are being spent on EHR and HIE development, yet patients are still required to lug around binders full of paper records, scan CDs, and other physical ephemera? And that, even when test and path results are delivered to the doc, each patient practically has to beg to get them?

    “Nothing about me without me” includes full access to our own data. We – patients – are still routinely denied full access, or access at all in some cases. It’s ridiculous. Give us our damn data, and let us fully participate in our health and health care.

    You’re in a position to drive some meaningful change. I look forward to watching you do it – and if I can help in any way, let me know!

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