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How to Set Up Patient Websites

Plus Some DO's and DON'Ts for Making Them Work Best

By

Updated June 26, 2014

If you are sick, or the loved one or caregiver for someone who is sick or injured, you'll find many family members, friends, neighbors, co-workers and others who want information. The sick person may be in the hospital, a rehab or treatment center, a nursing home, or even in his own home, but needs rest and privacy. Those interested folks are well-meaning, but incessant phone calls or visitors aren't practical. It's time to set up a patient website.

Patient websites allow the patient or caregiver to provide updated information as often as is practical about the patient's status. By providing the information online, all those people who care about the patient can stay updated and feel as if they are in contact. These patient websites also allow notes to be sent back to the patient, or comments to be shared in a guestbook, which the patient can enjoy or appreciate when he or she is ready. The patient still gets the rest and privacy he or she needs.

These websites are easy to set up. You only need access to the Internet, and if possible, a digital photo of the patient, either scanned or taken with a digital camera. You'll also need a list of email addresses for the patient's friends and family who want to be updated.

There are a number of online services that allow you to upload information about patients. Among the most well-known are:

They are free to use, and make it very easy for you to provide the details that help the patient's family and friends stay abreast of progress. They are created specifically for people who don't know much about using the web, providing simple forms for you to fill in. Plus both programs allow for replies to the patient in the form of emails or guestbooks.

Many hospitals and other medical facilities provide lounge areas with computers to help you keep in touch with family and friends. Both CaringBridge and CarePages have worked with hospitals, in particular, to create partnerships to facilitate this type of communication. Some facilities provide wireless Internet access so you can work on your patient website while in the patient's room.

There may be safety considerations to using patient websites, too. By virtue of the fact that patients are sick, or have had surgery or suffered an injury (meaning, an open wound), their immune systems are compromised, putting them at increased risk for infection. When visitors stop by, new germs are introduced. If those potential visitors can stay abreast of the patient's progress by using a website instead of visiting, then that possibility is eliminated.

You may wonder how these services are provided for free. Most are non-profit organizations that are supported by donations. If you find one has been particularly helpful, you may want to make a donation; afterall, it was a service that made your life easier.

You may also find advertising on the site. It may be general advertising (would you like to send flowers?) or it may be tied to the patient's pages. So, for example, you may find when a patient has cancer, an ad for a cancer hospital will pop up. Or if your patient has been injured, there may be aspirin ads.

Here are some DOs for patient websites:

  1. If you aren't the patient, then DO get permission from the patient to develop one of these sites. Some people are just too private to want anyone else to know what's going on. Others will be very happy you've taken the initiative to keep their loved ones in the loop.

  2. Photos: In most cases, DO use a photo of the person from before he or she got sick, depending on what the illness or injury is. A cancer patient undergoing chemo will have different needs or wishes from someone whose leg is in traction. Leave the choice of photos up to the patient, if possible.

  3. DO provide regular updates, including a conclusion. When "Joe" has his knee replaced, then heads to a rehab center, begins walking again, and then goes home, his friends are going to want to know those details. If he is having problems along the way, then they have the opportunity to send him some encouragement.

  4. DO let website visitors know when it is OK to visit the patient in person. Once Joe goes home, he may want visitors to keep him company and help him out around the house.

  5. After using a public computer, DO wash and sanitize your hands before you touch the patient. It will help to make sure the patient doesn't get an infection from you that may have come from someone else who used that computer.

Next up: The DON'Ts of Setting Up Patient Websites

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