HOUSTON  -  Questions upon questions: when a patient is diagnosed with cancer, before anything, is the wondering: "How will I be treated? Who will treat me? How will I make my appointments? What will happen to me?" And underneath this: the emotional grappling with the very disease itself. 

Leaders at The University of Texas MD Anderson Cancer Center understood the frightening and overwhelming first feelings that are triggered when a patient learns of his disease, explained Megan Chavez, vice president of operations at Tower Strategies, a patient experience consulting group. So the staff turned inward, she said, and asked, "How do we start to care for patients before they even walk through our door?" 

Finding the answer has led to collaboration among a range of leaders; officials from MD Anderson's clinical, marketing, and technical teams, the experts at Tower Strategies, and current and previous patients, said Gerard Colman, senior vice president and chief of clinical operations at MD Anderson. 

The result is a front-end patient portal that engages patients who have been diagnosed with cancer and are working with MD Anderson to establish a first appointment and a treatment plan. The referral management system, known as PreCare, went live in two clinics in August of 2012, and is expected to be completely initiated throughout MD Anderson's 24 clinics this coming August. 

"What happened in the past was that the patient would call us, or submit an online form for an appointment, and we would get that, but then the patient wouldn't hear back from us for about a week or two, and they would assume that nothing was going on, which isn't true," said Todd Foster, principal systems analyst at MD Anderson. "We were busy for that week or those two weeks trying to get all their medical forms from their physicians, trying to get them financially clear with their insurance companies, and doing all of that work to schedule their appointments. But our patients didn't know that."

That one- to two-week period is an integral piece of MD Anderson's specialized care process; prior to a first appointment, the center focuses on gathering a patient's medical records, financial information, and complete care history so treatment can begin directly after the referral process. 

"There was a community perception and a perception among patients that MD Anderson was very hard to get into because of that  -  because it does take a long time to get on-boarded," said Chavez. 

"Sometimes it does take a while, and we're working as quickly as we can, and we need a way to let people know what's happening," said Foster. 

To that end, Foster and Colman echoed that PreCare acts as their window tool; it allows new patients to directly engage with the pre-appointment process. Rather than daylong bouts of phone calls, repeated appointment requests, and caregiver and patient frustration, the portal generates transparency on provider activity, said Foster. 

And PreCare was built on a foundation of patient response  -  Chavez worked with MD Anderson staff in shadowing two of the center's clinics to observe where technology could streamline current methods, how patients might be better pulled in, and how to standardize processes across the 24 clinics. 

"We simply observed and watched for things that our current system could not help them with in their daily activities," said Colman. "We also shadowed patients to understand what their first appointment visit was like.  We wanted to understand what their worries and frustrations were, leading up to their first-time appointment." 

A crucial call was for elucidation on the diseases themselves; Chavez remembers, in particular, one former patient who spoke up in a focus group that the leaders held during the PreCare development process: 

"One young woman said, 'Typically I'm an information seeker, but I was diagnosed with cancer, and I froze. I was so afraid to go on Google, I was so afraid to search my condition because I was so scared of what I was going to find. What I wanted was MD Anderson to give me that information, I wanted to know what they had to tell me about my condition and how it was going to be treated,'" said Chavez. 

Accordingly, besides showing a patient's status regarding medical-record collection, their financial situation, and the activity of MD Anderson staff, PreCare also features educational tools  -  videos on past patients' experiences, for example  -  that help to quell the confusion on a patient's diseases, and also focus the first appointment. 

"Placing our patient as the center of the project became our main guiding principle for the project," said Colman. "Everything we did had the patient's viewpoint in mind.  I think that is one of the reasons our patients like the system so much."

Operating on the axis of transparency and education, the tool has indeed generated positive patient response since its initiation; 80 percent of 40 surveyed PreCare users gave the system a 5 out of 5 satisfaction rating, and the remaining 20 percent gave it a 4, said Chavez. 

Looking ahead, the leaders are excited to reach more patients  -  and potential patients  -  through the portal, and to wield it as a tool to provide care, prevent any freezing, and answer questions even before an individual has stepped into the center. 

"This system has been so beneficial to our patients because it lets them see what we have, what we are waiting for, and a lot of education about the referral process, and what the first visit will be like," said Colman. "It has helped decrease anxiety for our patients that use PreCare."