Imagine that you have just come back from the doctor’s office with a frightening diagnosis. Waiting for you at home is an E-mail from the doctor with a list of Internet tools — web pages and support groups — to help you research your condition. You log on to the support groups and, in the middle of the night, you get reassurance and tips from those who have survived your disease. And as you trek from specialist to specialist, instead of lugging and faxing pounds of paper reports, you and your doctors can review your records on a secure Internet page, your web-based personal health record (PHR).

Web-based healthcare tools for consumers come under the general category of E-health, and this writer — a sandwich generation caregiver who has ferried family members to nine hospitals in four cities over the past five years — is an avid proponent of such tools. An exceptional Internet support group (www.acor.org) was a lifeline during a family member’s bout with cancer, and the new developments, such as PHRs, can’t come too soon. They can enhance health, improve quality of care, and cut costs. No less important is that “information-on-demand,” E-health style, reduces stress.

Some of the earliest E-health initiatives sprouted in central New Jersey, with its concentration of pharmaceutical and biotech companies. HealthAtoZ.com, for instance, started in 1995 and now owned by a large health plan, is a population health management company with 72 employees at Windsor Corporate Park. Intellisphere, a decade old firm at Princeton Meadows Office Center, publishes an Internet guide for doctors who want to refer their patients to appropriate websites (www.mdnetguide.com).

Princeton Living Well, a start-up, was the cover story for June 20.

Our most recent E-health discovery is Zweena, on Witherspoon Street. This struggling start-up is self-funded by its founder, John Phelan, yet it aims to make its mark in the PHR arena.

At the other end of the size scale — way at the other end — is the Robert Wood Johnson Foundation on College Road East. As it turns out, RWJF’s deputy director of health, Steve Downs, has been among the most prescient supporters of PHRs, and RWJF has allocated $4.5 million for this cause.

In spite of a lackluster response from consumers and great technical challenges, Zweena’s Phelan is trying to bring personal health records online now. And RWJF’s Downs is funding prototypes that could shape online healthcare’s future.

Everybody thinks web-based personal health records are a great idea. In today’s complicated healthcare environment, patients and doctors are inundated with pieces of paper — lab tests, X-rays, insurance authorizations, and physician referrals. Unnecessarily duplicated tests are costly, but confusing records (a wrong prescription, a mis-read blood test) can be fatal. The electronic PHRs’ ambitious goal: To collect all the information on one person or one family and make it accessible any time, anywhere, on the Internet.

PHRs are being supported on all fronts. Research funding is coming from, for instance, the College Road-based Robert Wood Johnson Foundation. The White House wants all medical records to be electronic by 2014, which would speed up the creation of PHRs. A bill introduced in Congress in March specifically supports the PHR effort. And as many as 200 entrepreneurs are staking out space in the PHR arena, according to the Markle Foundation.

On the consumer side, surveys show that 7 out of 10 people would use a PHR if they had one. Nearly half a million people have signed up for trial PHRs, and the numbers are growing as employers like Verizon, Dell, Intel, Pitney Bowes, and Wal-Mart reward their workers for using them.

Trouble is, web-based PHRs are not really ready for general consumption. Every aspect of obtaining and maintaining a PHR is unwieldy — assembling the information, entering it, keeping it private, granting access to it, and interpreting it. As of now, only very determined consumers are able to use PHRs in a meaningful way.

That’s because electronic medical records (EMRs, the digital records that doctors keep) have been around for three decade whereas PHRs are in their infancy. Some compare where PHRs are now to where the Internet was in 1994, full of promise that will take years to fulfill. Most of the start-ups, they note, have failed.

Enter John Phelan, a former Peace Corps worker with stars in his eyes and money in his pocket from the exit package he received after a reorganization at Wyeth. Phelan has a deep-seated passion to create the electronic health record’s Holy Grail, a PHR that focuses on the consumer. He believes his new firm, Zweena, can compete with the likes of big players in this field, like WebMD and OmniMedix Institute. He has signed up 50 clients for a beta test. The Witherspoon Street-based firm has four consultants: Bill Hackett (former CFO of CareGain), David Jacobson (in charge of IT), Mitzi Cole (an attorney), and Frank Sonnenberg MD.

Zweena aims to help individuals take a proactive approach to healthcare, and its model involves no advertisements. Like WebMD and OmniMedix, Zweena’s eventually aims to sell its service to employers and insurance companies. Under the current model, the consumer pays for access for Zweena. “Zweena becomes a tool to assist employees in being better able to manage their healthcare and ultimately empower themselves to be healthier (or at least more conscious of their health,” says Phelan.

Phelan has attended trade conferences for two years and, so far, has found no direct competitors. “Nobody is doing it the way we are doing it,” he says. “We are taking possession of the patient’s record, versus letting the patient put it up.”

“Particularly for people who have to manage complex care or multiple chronic conditions, having a PHR or shared care plan can serve as an invaluable vehicle,” says Joshua Seidman, president of the Center for Information Therapy (CIT) in Bethesda, Maryland. “It can help facilitate communication among multiple clinicians, and it provides the consumer patient with a potentially powerful tool for managing and organizing their critical personal health information.”

Phelan takes his inspiration from his mother’s encounter with breast cancer and his own years in the Peace Corps. The oldest son of a Chase Bank executive, he is fluent in French, having spent five of his childhood years in Paris. He went to a Benedictine prep school before enrolling at Columbia, where he double majored in English and economics, graduating in 1985. Using his French in the Peace Corps, he directed a health care facility in Morocco for young boys with polio. His goal, which he achieved, was to replace himself with a director from the host country.

Back home, he took an entry level sales job at Squibb, selling insulin in Iowa and Minnesota and then in California. There he met his future wife, who was singing in the Wellesley chorale. She is the daughter of an airline pilot and the granddaughter of the founding publisher of Playbill magazine, Frank Vance Storrs. A singer himself, and an avid arts supporter, he is the current board president of Princeton Pro Musica. After doing pharmaceutical sales, which he terms “a fabulous experience,” he went into the managed care area, realizing that getting a product in a formulary (a managed care company’s approved list of drugs) was more productive than face time with 500 doctors. In 1988, back in Princeton, he wrote a successful managed-care business plan for Squibb’s insulin project. He did a stint with a managed care firm before going to Wyeth, where he spent five years as a marketing director in the managed care group, and another five years directing the $7 billion retail and wholesale pharmacy business.

In 1999 his mother died at age 63, three years after being diagnosed with breast cancer. It was a confusing time. “I felt that there was nobody looking after the consumer,” says Phelan. “My mother was never clear about the process. And here I was, married, with four kids — and I didn’t have a copy of our medical records, and I was confused, at times, with the reimbursements. It is an unfriendly system.”

So when Wyeth reorganized, though he could have stayed, he took a chance at E-health’s brass ring. He had all the elements needed, including the market knowledge and the sales personality. His wife was working and drawing health benefits (she is a partner at WithumSmithBrown). A family inheritance will cover the education of their four school-aged children. Phelan had the vision and the passion to make a change and, with the Wyeth money in his pocket, he could afford to take some risks.

“My premise is that everyone approaches this from a money perspective,” says Phelan. “For us, it is not a quick buck thing. I am willing to invest a certain amount to look at ourselves in the mirror and ask, after the beta test has scaled up, how much did this cost us? Can we do it for a reasonable fee? Between now and then, I am fully engaged in financing this.”

Someone has described Phelan’s model as an electronic health record in sheep’s clothing. It will indeed be a direct conduit for records kept in the physician’s office, so the consumer does not have to enter the records. No other PHR has this direct connection, says Phelan.

Getting the client’s health information collected and put in one place is just Zweena’s first hurdle, predicts David Lenihan of CareGain, a healthcare software firm at Windsor Corporate Park. “The next trick is to assemble broad and deep data and deliver it to where it is needed.”

Here’s how Zweena proposes to accomplish the first task: Zweena clients provide the names and addresses of their doctors. Zweena elicits the paper records (or EMRs) and pays the necessary copying fees. For documents, such as insurance claims, that are being submitted electronically, software is being written. Meanwhile, a nurse on Zweena’s staff will enter the paper-based information into each client’s PHR. The clients will have access to their PHRs, and they can choose to give access to a doctor or family member.

“Our contract clearly states what we are going to do on your behalf,” says Phelan. “You sign a medical records release form. We take any records you have, but we would still go back to the doctors to get everything they have.”

CIT’s Seidman agrees with Lenihan that, after raw data is collected, making it meaningful is an even bigger challenge. Doctors’ notes, lab notes, and prescriptions need to be presented in context and in a consumer-friendly format. “It is important that personal health information be effectively integrated with consumer-oriented health content that is targeted to their moment in care, and tailored to their individual needs,’ he says.

Phelan agrees that improving health and preventing disease are the ultimate goals for collecting information in PHRs. “I was lucky enough,” he says, “to run into a dermatologist who found a cancerous mole on my back. Six months later I would have had chemotherapy and radiation. Now I look at moles everywhere. We need to learn to take better care of ourselves, and Zweena is being designed to help individuals to take a proactive approach to health care.”

Phelan agrees with Seidman that not all clients will be able to interpret 100 percent of the doctors’ notes. For now, Phelan will be content if the consumer understands just 75 percent of the information, and the 100 percent comprehension can come later. “Our number one priority is to get the blocking and tackling done right.”

Down the road, though, he hopes to have software to do the linking described by Lenihan as “the next trick” and by Seidman as “effectively integrated.”

“Because we know what our client has,” says Phelan, “our software will link to updates in each category, to make the information relative to that client.” This linking, nevertheless, will be autonomous and private. “The security of the client is paramount.”

Zweena has had its disappointments. In its most recent round of largess, the Robert Wood Johnson Foundation divided $4.4 million among nine winners, and Zweena was not among them. Phelan notes that the winners had hospital or academic affiliations, and he hopes to do better in the next round.

Also, beta test users are not easy to find. Currently Phelan is trying to reach the family market by running a promotion during Trenton Thunder games, and he tries to get 400 people to spin a game wheel each night. But so far Zweena has just 50 clients, one third of the goal for the beta test.

Zweena does not meet all needs. In privacy protection, it tries to be unsurpassed, but in quick response to emergencies, it is weak, at least for now. An ambulance crew will not get immediate access to your Zweena records. EMTs would have to look for the membership card in your wallet, call an answering service, and obtain your encryption code.

As for competitors, they are too numerous to count and almost too awesome to contemplate. For instance the National Digital Medical Archive (www.ndma.us) can send records, via electronic fax, to a private patient portal, and the patient may distribute that information. Verizon and Dell pay employees to use PHRs through WebMD, while Intel and Wal-Mart are using Dossia, provided by a nonprofit organization, OmniMedix Institute. Both systems say they can siphon data from EMRs, but, so far, neither will take care of entering data from paper records. On the other end of the size scale, FollowMe is one of the earliest small entries to the field; it charges a $25 annual fee.

Competition will only increase as the federal government gets into the act. A bill introduced in Congress in March would pay doctors $3 per patient signed up to use an electronic health record, the first step toward personal health records.

In June Medicare launched a pilot program (www.mymedicare.gov) for beneficiaries to look up information about the medications and services they have received. The four participating health plans — HIP USA, Humana, Kaiser Permanente, and the University of Pittsburgh Medical Center — already have online PHRs. The pilot will evaluate which works best.

Phelan professes to be undaunted. “I see anything that moves the consumer towards the electronic record as a good thing.” He points out that though some plans offer PHRs, they don’t know if their clients are using them — and how they are using them. “Once we are up and running with our beta test, Zweena will know.”

He also wonders what will happen when Medicare clients have questions. He thinks the healthcare plans will be the ones to staff the help lines. “And what happens if the client moves out of the plan, or even sees a doctor out of plan while they are traveling? How will that medical encounter be entered into the system? Zweena knows no boundaries. We are neutral. Where our client goes, we go. All of this is still early in the process. We love the challenge.”

Yet another hurdle is public perception. Two-thirds of Americans would like to access health information electronically, according to a Markle Foundation survey, but 80 percent worry about identity theft or fraud, and 77 percent worry about their information being used for marketing purposes. A recent study, conducted by Alexander Road-based Mathematica, found that medically underserved residents in New Brunswick were even more nervous about their medical privacy (see page 43).

In the early stage of Zweena, Phelan has a hidden advantage. His office is next to one occupied by Rick Weiss, an experienced entrepreneur who founded Viocare and co-founded Princeton Living Well, which was the U.S. 1 cover story for June 20. Weiss is an experienced entrepreneur with a terrific track record for getting funding. Perhaps success will be contagious.

Phelan encourages U.S. 1 readers, known to be early adoptors, to sign up for the beta test. “The beta effort is for anybody who wants to engage in it. It’s free. At the very least, you will get an aggregated snapshot of your health.”

Zweena, 145 Witherspoon Street, Princeton 08542; 609-651-4826. John Phelan. www.zweenahealth.com.

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