Swepa.com Newsletter - June 19,2003

A New York City Lawyer, after surviving leukemia, creates medical information products and sells them online using the subscription website business model

Andrew J. Robinson had a varied professional career prior to becoming an Internet entrepreneur. Then he founded an online publishing company with a group of other professionals, all of whom had experience with acute and chronic illnesses as patients and caregivers.

In this exclusive interview, he tells SWEPA about both his personal and his latest accomplishment.

SWEPA By way of background, what is your educational and professional background?

AJR My professional background is as an attorney. I have a J.D. from the National Law Center, George Washington University. Before starting Patient2Patient I was a New York trial attorney for over 15 years. In addition to trial work I also handled appellate work. Over time I had a number of small business clients who I advised both legally and on business practices.

Prior to becoming a lawyer I managed the start-up of a satellite furniture delivery company over a three-year period, increasing its net revenues from $3 million to $15 million a year. I also participated in a number of other business enterprises before that.

SWEPA What best describes your position with Patient2Patient LLC?

AJR I am one of the founders and I am the Executive Director, and in that position I effectively act as the CEO.

SWEPA How did you come to start http://www.patient2patient.net/?

AJR Patient2Patient is a unique company with an unusual mission.

The company was founded by a group of professionals in the New York area all of whom had experience with acute and chronic illnesses as patients and caregivers. We felt that the Internet provided a tremendous resource for patients. At the same time we saw that there were many possibilities that were not being realized from the patients' perspective. So we started the company with two purposes -- the first was to provide truly useful services for patients and the second was to create a company with a sustainable revenue model that would pay for these services and that would serve to pay for the development of further services.

The basis for my participation in Patient2Patient came from my own experience as a cancer patient. Many years ago, while on a vacation with my older daughter, who was then five years old, I stopped into a local emergency room to get an antibiotic, because I was developing an upper-respiratory infection. They took a blood test, and the doctor came back to me, and told me that the blood test revealed that I had "terminal and incurable form of leukemia, and less than five years to live." He did tell me, however, that I didn't have to end my vacation to go rushing back to New York, because there wasn't anything that any doctors there could do for me!

Over the next few years we tried all of the current treatments for my condition, Chronic Lymphocytic Leukemia, at some of the top medical centers in New York City. None of the medical treatments had any effect on the course of the disease. At that time I was also pursuing complementary remedies, and after the failure of the medical treatments I tried two complete alternative programs. Although they helped my stamina and strength they had no effect on the course of disease. During that first five years after I was diagnosed a few medical centers had begun doing bone marrow transplants for people my age with Chronic Lymphocytic Leukemia. CLL is a disease that generally effects older people, 70 years of age or older, and at the time I was first diagnosed they did not have bone marrow transplant programs for younger patients.

I investigated the two major transplant centers for CLL in the U.S. at Dana Farber Medical Center, and MD Andersen in Houston. But both of them determined that I would not be a candidate for a bone marrow transplant, because the transplant method they use involved high-dose chemotherapy. My disease had failed to respond to high-dose chemotherapy so they felt there would be no purpose to attempting a transplant. In the meantime I learned about a new form of bone marrow transplant program being conducted in Israel, and I spoke with the head of that program, Professor Shimon Slavin, and later met with him when he traveled to NYC. He said that it would be extremely difficult, but that he was willing to give it a try. Fortunately, my sister was a bone marrow match.

So, in March of 1998 I traveled with my wife and youngest daughter to Israel for what was supposed to be a three-month trip for the transplant. We returned a year-and-a-half later after months and months in the hospital, and after a series of complications. But the transplant itself was successful. At the end of nine months, as we were planning to return to the States, my spine fractured due to the long-term side effects of the drugs I was on, and collapsed in five places, leaving me bedridden. At the time the doctors couldn't be sure if I would ever walk, or sit up again, or what the long-term effects would be. Fortunately, I was able, through physical therapy and other medications, to regain some bone strength, and to return to the U.S.

Although the spinal fractures stabilized, the medications also led to a condition led to avascular necrosis, AVN, which led to ongoing fractures in my knees and shoulders. Overall, since being diagnosed, I have been hospitalized over 30 times. Throughout all of this -- and overall I have been extremely fortunate -- I was always very frustrated on a practical level at what patients had to go through, the lack of information, the lack of help and resources, and the tremendous burdens and obstacles that were in their way, in addition to just facing the disease itself. Upon returning to New York, I felt that rather than returning to law, I would like to do something to try and help benefit other patients and caregivers.

This was the beginning of my involvement with Patient2Patient. The real challenge for the company was not so much in trying to determine useful services to provide to other patients, but trying to find a workable business model in order to develop, prove, and sustain our first set of services.

As we watched the development of subscription services for other types of content, we felt that health certainly offered an opportunity for a subscription based service that would provide services and information to patients that would not otherwise be available.

For our first service, we have developed the first Downloadable Medical WebGuides that provide detailed Internet medical, resource, support and website information focused on a particular condition or illness. Our WebGuides solve the problem of patients looking for disease information who use a search engine and end up with approximately 450,000 listings for most major conditions.

A Rand study, as well as a number of other reports, found that a majority of patients using the Internet do not find the information that they are looking for. The Rand study estimated that four out of five patients using the Internet do not find the information they need.

Current estimates put this user group at somewhere between 60-80 million U.S. adults. Quite a problem. To develop our WebGuides, our medical and research staff conducts hundreds of hours of research to select the best medically accurate sites and information on the Internet for a particular condition. We then organize the information into 20 different topic areas focusing on the issues and concerns that patients confront during the course of their illness.

Some of the categories of information are diagnosis and treatment information, medication information, finding specialty doctors in hospitals, medical journal articles, current news and developments, caregiver resources, on-line support and community, etc.

In developing our WebGuides we also develop proprietary methods of searching, and selection criteria that both utilize established government standards and medical standards for credibility, as well as adopting additional criteria concerned with the patient's perspective on usability, style, substance, tone, etc. The WebGuides are "interactive" (you go right from our guides to the website information) and run to more than 175 pages. Each guide also includes extensive advisory text on how to make the best use of the resources and information that can be found on the Internet. The guides can be downloaded in both Word 97 and PDF format. Part of our long-term goal is to build a database of conditions and license the database to physician groups, Managed Care Organizations and other Healthcare Stakeholders.

SWEPA How long has your site been active, and what is your fee structure? What is included with a subscription?

AJR The development of the web guides itself took over a year, with three rounds of development and testing. We relaunched the site with our first web guide offering on March 29, 2003. Our subscribers are patients and caregivers who are interested in information on a particular disease or condition.

We offer them a one-year subscription to a web guide for the particular condition they're interested in, for example, Parkinson's disease. Subscribers can download an initial web guide for free, and use it for 30 days. A subscription entitles them to one year of updated web guides for their particular condition. We update our web guides every 90 days to reflect new sites, changes in old sites, new features, and new navigation. Because the Internet is a dynamic medium, anyone who wants to stay abreast of the current information finds it valuable to have a subscription, and to be able to access the most current WebGuide for that condition.

The price for subscription is $21.95 per year. We've tried to keep the price extremely reasonable, because we understand the financial stress and pressures that patients and caregivers are under. In addition, we are looking into offering our subscribers other databases as part of our subscription offering. These would include what we call "Best Patient Practices," -- the best ideas, and practices that patients and caregivers have developed in dealing with common problems.

SWEPA Now to the technical details. To build your site, what tools did you use, and how long did it take?

AJR The site was built using open source products, namely PHP and MySQL for subscriber management, and is combined with the proprietary product Shopsite, that handles the e-commerce portions.

SWEPA How long did it take?

AJR The development of the current site took approximately five months.

SWEPA How easy, time-consuming, etc. is the process of adding new content? How many people are involved in preparing and posting editorial content?

AJR The content on the site is very stable. I have one health web editor who handles the content on the site. The content development is focused on the development of the ongoing WebGuides, which is very involved. At the present time, we have an Internet research librarian and three health editors. One of the health editors is an RN clinical nurse practitioner with 20 years of experience in patient care.

All the content is reviewed and overseen by specialty doctors in the field -- doctors who specialize in the particular disease or condition. Another medical doctor who specializes in Integrative Medicine and who is familiar with alternative/ complementary medicine reviews the alternative and complementary medical sites. And our medical advisory board oversees all the WebGuides.

SWEPA Marketing and promotion seem to be a great challenge for most subscription website publishers. How have you approached this task, and what kind of results have you experienced?

AJR Marketing/Promotion in our case initially has been very straightforward. Since our target market are those people using search engines looking for particular disease and condition information, we rely on paid search engine placement, using the terms for the specific condition. So far, our click-through rates have exceeded our projections for daily traffic.

We are also pursing long-term agreements with managed care organizations, physicians groups, and corporations who are interested in licensing our database of conditions, so as to make them available to their members/employees. We are very interested in pursuing these opportunities as it allows us to get this information directly to patients without having to charge the individual patients for the information.

SWEPA How do you find new customers, or how do they find you? What's the process like for increasing sales and memberships?

AJR Right now, since we launched this a month ago (April 2003), we are still early on in the ongoing development of increasing sales and memberships. We are going to begin pursuing an aggressive affiliate program, offering an incentive-rich program to affiliate websites, organizations, and companies who would want to link and direct their users/members to our site. For organizations the affiliate percentage could be offered as a discount to their members, or the money could go directly to the organization to help fund their programs.

SWEPA What has been the greatest challenge to date doing business online?

AJR I think our biggest challenge has been understanding and overcoming the technical challenges, both in the development of a downloadable guide, which we developed in Word 97 in PDF format, and dealing with browser issues, i.e., what level of browsers to make our site available to, testing, and then recoding to accommodate different kinds of browsers.

SWEPA What tips would you pass on to us for publishers who want to start a fee-based website?

AJR I would suggest two things. I read this in an entrepreneur survey -- the question was, "what's the most important thing an entrepreneur has to start off with?" There were different options of backers, money, persistence, customers, a desk, etc. The correct answer was "A customer." You want to understand what your market is, who you're going to be marketing to, what they're interested in, and what their needs are, and everything revolves around that.

Second, at this stage there are great resources available for starting a subscription website. You don't want to be inventing the wheel for yourself, you want to tap into specialists who have already built these kinds of websites, and use tested shopping cart software, credit card software, etc. It's really good if you can find someone to mentor you through all the questions and challenges that you're going to be facing.

Also, it is important is to find someone with good business experience and sense to help guide you through the process of building a business. You have to figure out what you know, and what you don't know, what you're good at, and what you need help with, and make sure you get the help you need.

SWEPA What subscription based websites do you subscribe to and/or recommend?

AJR For a subscription website I like Ancestry.com. I also subscribe to Dr. Ralph Wilson's Web Commerce Today.