Phoenix Ambulatory Blood Pressure Monitor Project
Sub-project: Sphygmochron.org Website Vision

Project Description

The purpose of the Sphygmochron.org website project is to construct a website that would make Sphygmochron software for analyzing blood pressures and heart rates time-structurally [1]  and other information available to the public and to advanced transdisciplinary basic as well as biomedicalresearch, with the latter gradually improving the service rendered by the website to self-care recipients.

This is currently just a proposal of project work that the Phoenix Project might do, or at least support.  It has not been reviewed or approved by members of the Phoenix Project, and no commitment to any ideas presented on this page is implied.

Project Deliverables

Introduction

This paper describes a possible vision for a web site that makes Sphygmochron software and other information available to the general public.

Rationale

The intent of the web site is to provide cost-free access to Sphygmochron analysis software for home users of blood pressure monitors, and their professional healthcare providers.  Sphygmochron software provides multiple analyses of a series of blood pressure measurements made with commercially-available blood pressure monitors intended for home use, and with high-quality monitors normally found only in health care settings.

Sphygmochron software provides multiple analyses of a series of blood pressure and heart rate measurements made with commercially-available blood pressure monitors intended for manual home use, and with "ambulatory" (ambulatorily usable) monitors available with an 80% discount through a BIOCOS project (corne001@umn.edu) directly to individuals or as used in conventional health care settings for complementary chronomic analyses.

Analyses are primarily oriented towards diagnoses of multiple types of blood pressure and heart rate variability disorders. Some of these diagnoses are more precise than those that can commonly be done with single blood pressure measurements taken in clinical settings, or even with 24-hour ambulatory blood pressure monitoring that is now occasionally done by health care professionals when it is not interpreted chronomically. There is value in:
Disorders in variability of heart rate and blood pressure may, in some cases, represent health risks equal to or greater than those associated with a diagnosis of hypertension. [For example, see appendix Saving Lives, available as a handout from the Halberg Chronobiology Center at the University of Minnesota.] 

A major aim of the website is to enable a "self-helped" style of medical care; it is our belief that the current trend towards more self-directed health care will continue, and this website should provide resources for use in such self-directed health care as its primary function.  The website is also available for healthcare professionals to use directly in analyses of patients not participating in the self-helped style of medical care.

The web site contents and usage of the analysis software is made free to all, in exchange for permission to use all blood pressure data and associated medical history that is entered into the web site for analysis in medical research projects (specifically the BIOCOS project) and to improve the database of reference values that the software draws upon to interpret the results of the analysis and hence with yearly information by the user via e-mail of his/her health status.

Usage of the sphygmochron software

[TBD: Consult "Why and How", available as a handout from the Halberg Chronobiology Center at the University of Minnesota]

Contents of the web site

The website will grow and evolve over time.  Specific components are to be implemented, to guide its growth.  The first component is intended to appeal to the self-helped care individual user.  The components that follow make the web site more useful to both the individual user, health care professionals, and researchers in the field.  These additional components are expected to be implemented in an overlapping way rather than sequentially, beginning after the first component is complete.

Component 1: Single home user

In this stage, the web site consists of an introductory "splash" screen with the web site name and links to the following items:
The scenario here is to allow a single home user to log in and submit his own blood pressure data for analysis, regardless of whether that data was collected by an automated ambulatory blood pressure monitor, or was collected some other way.  

The user creates an account with a name and password of his own choosing.  He is encouraged, but not required, to associate an email address with this account.  He is automatically assigned a patient id that is to be used in lieu of his name.

The upload page asks for the blood pressure data in a specific-format Excel file (the .pr0 format), gender, age, sleep and wake times, previously-diagnosed diseases, and prescription and non-prescription medication being taken.  It returns the Sphygmochron analysis document in a form that the user can save on his computer or print on paper.

The information collected is saved for the BIOCOS project.  It is moved off from the website computer to help make that computer less of a target for internet hackers.

Component 2: Multiple input formats

Blood pressure data in formats other than the .pr0 Excel format would be accepted by the website.

To support a scenario of a home user with a blood pressure monitor without a way to download the data to a computer file, the website will allow the user to type the blood pressure measurements in to a web page directly.  The measurements will be returned to the user in both the Sphygmochron report and in a datafile or Excel spreadsheet that the user can save on his computer.

To support users retrieving data directly from blood pressure monitors, the website will accept files as produced by the device directly.  This may mean decoding or decompressing files; we will be dependent on manufacturers of the devices to give us information on proprietary file formats.  (And that kind of information may not be easily obtainable.)

To support home users and health care practitioners that have purchased other blood pressure analysis software such as Dr. Pro, the website will accept data files used by or produced by such software.  This may again be dependent on our ability to obtain information about proprietary file formats.

Component 3: Multiple patients per account

The purpose here is to expand the "account" concept so a logged-in user can perform analyses for multiple people.  The first major scenario to be supported include a family member doing the web site access for children, aged parents, people with disabilities, or others that fall within his guardianship.  The second scenario is for a healthcare professional to log in and submit data for patients.

The web site account concept will be extended to allow the logged in user to create multiple patient IDs.  Any logged in user that has multiple patient IDs associated with it must specify the patient ID when running a Sphygmochron analysis.

Component 4: Comparative Analyses

In this stage, comparative analysis programs currently used at the Halberg Chronobiology Center can be run by a logged in user.  The comparative analysis programs need two or more files of blood pressure data taken at different times in the patient's life.  

The scenario here is to allow the patient or his health care professional to look for long-term trends.  [TBD: What do the comparative analysis programs really produce that's of value to the patient or his doctor?]

Implementation of this stage could take either of two directions.  The first is to require the user to upload old blood pressure data files as well as current ones for the analysis; this allows us to maintain the philosophy that the website does not keep copies of users' data on the system where they may become accidentally available to website hackers.  The second is to implement higher levels of website security sufficient to make us and the users comfortable with keeping all historical data available to the website computer.

If the second direction (keeping historical data available to the website machine) is chosen, a feature of the website can be to display all data and analyses for a particular patient, to support a scenario where a patient that has been self-monitoring for some time decides to involve a health care professional and make the historical data available to that professional for analysis.

Component 5: The Library

A small, well-focused library of materials related to Sphygmochron analysis, heart and blood vessel physiology, cardiac diseases, and treatments will be kept on the web site.  It is important for it not to become a disorganized collection of seemingly random links to information scattered around the web.

The Library will contain sections for different types of users:
The most important section might be the one for adult home users.  It needs to support an ability to:  by users with different backgrounds and levels of education.

The Library will contain materials that are not yet accepted by many mainstream medical professionals.  To prevent the Library from being perceived as having been produced by a "crackpot", the materials that are made available will have to be professional, presentable, and not refer to unsubstantiated theory.  The materials must be of sufficient quality that a mainstream medical professional would accept them given sufficient exposure and education.

Component 6: The "forum" (bulletin board)

A popular web mechanism used by some moderately intense internet home users in self-help or self-directed education situations is "forum" software that lets users communicate with each other via leaving publicly available messages directly on the web site.

Multiple forums can be made available, to organize entries into categories such as How to use the Software, and self-organized support groups.  (Within each category, multiple conversations are carried on simultaneously with the concept of forum "threads".)

A "chat room" service could also be made available.  The effectiveness of this seems questionable.  Even if we could provide a medical professional to guide interactive chats in useful directions, this doesn't seem likely to be worth the effort.  I think this would be similar to radio programs that put a medical profession on the air to answer questions that people are not comfortable asking their doctor; my experience is that the medical professional can not effectively help those who ask the questions (often for legal reasons), and end up repeating a phrase such as "you should consult with your personal physician on this subject" over and over.

The website is not to provide a "blog" (web log) capability that would allow a user to own an entire page in an attempt to publish to the world some fringe opinion or other agenda.

Component 7: The help desk

At least one email address would be published on the website for the purpose of having a place for users to go to when they have problems or questions.  Instructions on the website would promise confidentiality.  Multiple addresses may be useful for different categories of problems, such as mechanical problems with the website or Sphygmochron software, submitting documents for inclusion in the library, and requesting a professional opinion of a particular Sphygmochron analysis.

A "live" help desk, staffed by humans, is not currently envisioned.

User Account concepts

[TBD]

Security and Privacy notes

[TBD.  Includes HIPAA.  Consent form prior to uploading data files to the Sphygmochron]

Website funding and hosting

Development of the software and Library is done by volunteer labor.  However, hosting the website includes purchasing computers and/or commercial web hosting services, purchasing software, administration and troubleshooting, and responding to contacts from users.  These things generally cost money.

Potential sources of funding beyond what can be done by volunteer labor include:

"Advertising"

In this section's title, the word "advertising" refers to advertising the existence of the website to the potential user base, and encouraging them to visit it on an ongoing basis.

Getting users to visit and use the website is a major issue.  Potential users will have no idea the service exists, so it will not occur to them to search for it; entries in web search engines will not draw users to the site.  Other ideas include:

Published material

In addition to making the site known, there is a need to educate the public about the need for blood pressure analysis and self-directed health care.  Popular, affordable, effective ways of educating the general public on new concepts include publishing books and magazine articles.  Books can be very thorough, and can be more comfortable to read for a large segment of the general poplation.  However, they are expensive to write and publish.

Magazine articles may be easier to write, and can be targeted towards the readership of a particular magazine or market segment.  For example, a sports magazine may accept an article that explains how to use Sphygmochron analysis in a sports-medicine context.  A financial magazine may accept an article that explains use the Sphygmochron in diagnosing hypertension in older male executives with sedentary occupations.  A golf magazine may accept an article that contains an overview that combines those two areas.  A magazine for housewives may accept an article with stories, annecdotes, and testimonials about the ability to detect cardiac diseases in women that are typically overshadowed by media coverage of health problems of men.

Although they may be easier to write, magazine articles may be hard to sell.  In addition, they are not likely to provide a steady stream of new users to the website.

Pay-per-click advertising

The website might display advertising about medical products and services to generate some income.  Almost any advertising, however, would probably work against the desire to maintain a certain perceived level of professionalism, quality, and independence from financial motivation.

Email communications

For those accounts where the user was willing to provide an email address, a notification service could send emails reminding the user to provide new data for analysis on a regular or semi-regular schedule, to update his medical history once a year, or inform the user of new services being made available.  More difficult to implement would be an ability to "subscribe" to notifications of new threads in the forum or materials in the Library that match that user's interests.  All such email generated from the website should be designed to help draw the user back to the website from time to time.

[End of document]

About This Page

This page is maintained by Larry A. Beaty. It was last updated on 27  January 2007

The author(s) provide this information as a public service, and agree to place any novel and useful inventions disclosed herein into the public domain. They are not aware that this material infringes on the patent, copyright, trademark or trade secret rights of others. However, there is a possibility that such infringement may exist without their knowledge. The user assumes all responsibility for determining if this information infringes on the intellectual property rights of others before applying it to products or services.

(C)  2007 Larry A. Beaty.  Copying and distribution of this page is permitted in any medium, provided this notice is preserved.

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