Information about how we handle your data.
Data We Collect
The minimal information we collect when you signup at MyHealthOutcomes is a first name and a working email address. The first name can be your own or, if you prefer, a pseudonym. The name or names you provide will show up on printed reports, so if you want to give your doctor your printed summary with your name correctly displayed, then you should provide us with your actual names (first and last). However, this is entirely your choice.
The email address must be one at which you can receive email — so that our system can send you the appropriate reminders when it’s time for you to perform a new study. However, this email address does not have to have any identifiable connection to you; you can set up an anonymous account at one of the email providers like Yahoo or Google. We do not expose any email addresses in any fashion that can allow email spammers to harvest. Patients will see their own email address on their own My Outcomes pages, as will their providers — if they give their providers access to that page. MyHealthOutcomes web staff can also see these email addresses in case we need to contact you about your use of the site. No one else can see any email address.
Logged-in users can set their time zone so that our site adjusts any times listed on pages on our site to the user’s actual time zone. This is optional and at this point unimportant, since we do not have any services that rely on exact times in this fashion.
Gender and Year of Birth
Logged-in users can set their gender (male or female) and/or their year of birth. This is entirely optional, so anyone who wants to maximize their anonymity can leave these data unstated. In the future, we may provide tools to allow patients to find others similar to them — and gender and age will be the primary determinants of such similarity. If you provide us with this information, then we will be able to add you to any gender or age-based discussion groups, for example. Without the information, you’ll remain more anonymous but will not have access to these other resources.
Patients can record in our system several types of clinical data:
- Other treatments
Recording this information is entirely optional. If you do keep accurate records of these data, they will print out with your clinical summary. Having an accurate, up-to-date medication list is particularly useful during clinic visits with your doctors, so we encourage you to use this feature. If you choose not to, then the data simply will be absent in the printed reports.
In the future, we may develop additional tools using these data to link patients up to others in our system who are taking similar medications, have similar diagnoses, etc. If you provide us with this information, then we will be able to add you to these topical discussion groups. Without the information, you’ll remain more anonymous but will not have access to these resources.
We will not “harvest” data about medication use, other treatments, or diagnoses to sell or otherwise market to other entities such as advertisers. We do not benefit from your using our system to manage these data; only you do.
Health Status Data
The core data we manage at MyHealthOutcomes, of course, is the health status data collected via our health outcomes measures — the Seattle Angina Questionnaire, the Kansas City Cardiomyopathy Questionnaire, and the Peripheral Artery Questionnaire. Every “test result” using any one of these instruments is stored in our database in completely anonymous form. There is a link to your “account” record in our database, but that has only the types of information we’ve discussed above. Individual results — and serial results over time — have no meaning apart from your own condition.
Personally Identifiable Data
To emphasize: it is possible to use MyHealthOutcomes’ services while providing absolutely no personally-identifiable data. Some features in the future may depend on some minimal information (gender, age, diagnoses, medications) from you, but providing this information will always be entirely optional and up to you.
Access To and Use of Data
Logged-in users at MyHealthOutcomes can only see their own data via their My Outcomes page. They cannot see anyone else’s pages. Providers (doctors, nurses) can see their patients’ data only if those patients have explicitly granted their providers access to their My Outcomes page. Patients can grant or revoke that access at any time. MyHealthOutcomes web administrative staff can access patients’ pages in order to help with any technical problems or questions.
Patients can share their login credentials with anyone they want — family members, friends, etc. — if they want those people to be able to access their information online. Of course, MyHealthOutcomes has no way of preventing or even detecting this kind of sharing; we can only assume that someone logged in as one of our users is in fact that user. Users should therefore be careful whom they give their login information to — but this is completely under the control of users.
MyHealthOutcomes does not use any user data for any purposes other than for providing services to those users. We do not aggregate, analyze, or sell any data to any entity such as marketers or advertisers.
Created: March 10, 2009 11:44; Last updated: March 10, 2009 12:44