About MyHealthOutcomes

Who and what is MyHealthOutcomes, and why should I trust them?

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  1. Who are the people behind MyHealthOutcomes?

  2. How does MyHealthOutcomes make money?

  3. How private is my information at MyHealthOutcomes?

  1. Who are the people behind MyHealthOutcomes?

    MyHealthOutcomes is the latest collaboration between two cardiologists, John Spertus, MD, MPH and Stan Kaufman, MD. They literally began talking about the concepts that have led to MyHealthOutcomes during an emergency angioplasty back in 1993 at the University of Washington when John was a cardiology fellow and Stan was attending.

    John was investigating ways of assessing patients’ coronary artery status by noninvasive, remote-access techniques. He had decided that a health-related quality-of-life questionnaire would be brilliantly useful for monitoring entire populations of patients — except for the logistical problems and expense of handling all those paper forms. Stan was beginning to convert the computer-based electronic record systems he’d developed into an Internet-based format using a brand new — at that time — medium called “the web”. It was obvious to the two of them that web-based applications for deploying John’s new Seattle Angina Questionnaire and other similar tools would be ideal.

    So here they are:

    John Spertus Stan Kaufman

    John completed his medical school at the University of California, San Francisco; his residency, cardiology fellowship, and Masters of Public Health at the University of Washington. John is now Director of Health Outcomes at the Mid America Heart Institute in Kansas City, Missouri and Professor of Medicine, University of Missouri, Kansas City.

    Stan completed his medical school at the University of Kansas; his residency at the University of Washington; and his cardiology fellowship at the University of Minnesota. Stan is now a full-time professional geek with The Epimetrics Group in San Francisco, California.

  2. How does MyHealthOutcomes make money?

    That of course is the $64,000 question for anyone who tries to offer an innovative information technology service in the healthcare area. Obviously there must be some cash flow or else it simply is impossible to keep the lights on and provide systems for people to use.

    A number of other groups are now providing online tools that patients can use themselves — as opposed to electronic medical record systems that doctors and nurses use. Microsoft and Google both have created web-based “personal health records” where patients can store test results, medication lists, and the like — and they both sell their users’ “eyeballs” to advertisers. PatientsLikeMe is an innovative “community” for patients with various neurological problems that hopes to sell scrubbed data about its patients to drug companies and other health product manufacturers for marketing purposes.

    We have decided at this point to avoid the concessions that dealing with advertisers and marketers necessarily entail. Instead, we’re hoping a much simpler subscription model works. Since the primary beneficiaries of our systems are the patients themselves, we think that patients will feel that access to our services will be worth the annual price of a typical magazine. Of course, we’ll continue to evaluate this over time based on feedback we get from people who use our services.

  3. How private is my information at MyHealthOutcomes?

    The short answer is: as private as you want it to be. Here are the steps we take to insure that your information is completely confidential.

    No personally-identifiable information is required to use our services.

    To signup, all you need to give us is a first name — which can either be your actual first name or a pseudonym if you prefer. We also need a working email address, but most people have email accounts at Yahoo or Google that reveal nothing about who is actually at the other end of the email (like “myfakename@yahoo.com”).

    Of course, if you want to use your real first name and also your real last name, these names will show up on reports you print out, and you’ll see them in friendly places when logged into our site. But all the tools will work identically if you don’t.

    Also, if you choose to enter your year of birth, gender, or other clinical information, we can sort you into discussion groups for MyHealthOutcomes subscribers to use to communicate with others similar to them about their common health issues.

    No one can access your private pages other than your own providers, and then only if you explicitly allow your providers to do so.

    You can select your providers (doctors, nurses, other types) — if they have also signed up at our site — and grant them the ability to see your results online. They cannot open your pages otherwise — you have to let them in. If you choose not to give them online access, you can still print out your results and take them with you when you see your doctor. Most people seem to prefer this way of sharing their data with their physicians and family.

    If you want to let your family see your results online, you can simply share your login information with them. They of course should be careful not to enter any bogus information about you, but we figure that if you trust your family enough to let them see your results, you trust them enough to do the right thing with those results. We — and other groups like Google — have considered creating “family-member accounts” that can see but not touch patient data, but these accounts have proven to be too confusing and underutilized to be worthwhile. So we’ve gone with the simplest route: you can share your information with whomever you want to by letting them login as you.

    Other patients of course cannot reach your personal custom web pages in any fashion or in any way.

    We do not aggregate, collect, report, or sell any other clinical information you store about yourself.

    Your summary “My Outcomes” page can include a variety of other clinical information — your diagnoses, medications, and other treatments. If you choose to record this information, it will print in the summary reports that you can take to your doctor. We also can use it to give you access to discussion areas for MyHealthOutcomes subscribers with similar characteristics. Using this feature is entirely optional, however, and up to you. We will never use this information to allow marketers to send you unsolicited email about their products.

    All the information we store in our database is anonymous.

    Your outcomes results from our various instruments (the SAQ, KCCQ, and PAQ) are simply numbers that have no meaning by themselves. Even if you include lists of medications or diagnoses, these data can not be interpreted by anyone even if they could hack their way into the database. All online payments are handled via a credit card gateway where the information is processed by the banks — we store absolutely no personal financial information in our system.

    Our fundamental approach is this: we keep the data simple, safe, and secret.