This weblog is a spin-off of another weblog, gotCLL, which I also developed and maintain. On that weblog there is a page on medical and healthcare mobile apps. In late May, 2013, as I began researching and creating my own personal health record (PHR), I began to add posts and pages related to PHR to gotCLL. Surprisingly, it wasn’t easy.
A Need for Useful Information & Guidance
Most of us–patients who want to understand PHR and to begin creating and using our own PHR–need concise, useful information and guidance. The amount of information on PHR on the internet on PHR, even though it’s a relatively new and emerging topic, is already staggering. Much of it is less than helpful, either being too detailed, too sketchy, too old and out-of-date, or simply irrelevant for a patients just beginning their own PHR journey of discovery, development, and use.
It took me quite awhile to search, sort, and filter out that which I needed to understand PHR and get started with my own; and my searching, sorting, and filtering are far from over. With so many options it was difficult to know where to begin, what was the best approach, which resources–health information technology (H-IT), PHR systems, and enabling web-based and mobile apps–even to consider, let alone, learn about and use.
It soon became obvious to me that what I was learning, experiencing, and attempting to develop and provide for CLL patients and caregivers on the gotCLL weblog would be of value to all patients and caregivers. After some thought, I defined the purpose, outlined the organization and content, decided on the name and subtitle–PHR4us, a beginners’ guide and reference–and on June 30, 2013 began creating this WordPress weblog.
Current Status of PHR4us
As of 6pm, July 31, 2013:
- The weblog has 59 published pages.
- Most drop-down menu items are now linked to actual pages rather than to a dummy page.
- Vision and Mission statements have been added to the Weblog page, under About.
- A Webmaster page has been added, under About.
- The first two parts of the Beginner’s Guide has been drafted (more are to come).
- The Help page has been updated.
- A prototype PHR4us Forum has been created, with a link to it on the sidebar.
- A prototype Facebook page had been created, with a link to it on the sidebar.
- A copyright notice has been added to the sidebar.
- Change My View, Reviews, Microsoft HealthVault Support, and Videos & Podcasts have been added to the Help drop-down menu.
- Pages supporting use of free TruCrypt software to encrypt PHR on USB flash drive has been added.
- A call for alpha testers was added July 31st to the Welcome sticky.
As of noon, July 2, 2013:
- The weblog, PHR4us, has been established on WordPress.com.
- A masthead graphic was created representing some PHR resources.
- An About page with the initial weblog outline was created.
- A menubar with drop-down menu items was created, reflecting the outline.
- A dummy page were created to which menu items would link until their pages were developed.
- Links to the Microsoft HealthVault and to selected, enabling web-based apps were added to the Link To menu.
- Two posts and two pages on HealthVault and Blue Button from gotCLL were copied and edited for PHR4us.
- Prototypes of several types of information boxes were created for use on the weblog and a page describing them was added, with a link to it on the Help page.
- A Change Log (spreadsheet) on Google Drive was added with public read-only access.