How to Properly Set Up A Patient Website

Do's and Don'ts for Making a Patient Website

Doctor on computer
Hinterhaus Productions/The Image Bank

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.

Purpose of 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 though 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.

Online Services for Patient Sites

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.

Safety Considerations to Patient Sites

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.

Do's 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.

Don'ts for Patient Websites

  1. DON'T divulge very personal information. Keep privacy in mind at all times - not just the patient's health or medical privacy, but personal details, too. When you set up the pages, DON'T use first and last names (maybe use a first name and another word to go with it, like Joe's Surgery or Monica's Journey). DON'T supply anyone's real address to be viewed publicly, and of course, don't supply insurance, social security or other personally identifiable details. This information could be hacked, or someone who should not gain access could get the information, even if the website promises they won't share it. Be cautious. (Read more below.)
  2. DON'T include anything the patient doesn't want you to! And if you aren't sure, then don't share the information. When someone is sick or hurt, they need to be mentally and emotionally focused on getting better. If you upset them by sharing information they don't want shared, it could affect their healing process.
  3. DON'T be alarmist, and DON'T downplay the situation either. Be as honest as you can without violating the patient's privacy. If Joe's surgery didn't go well, or if Joe acquires an infection while in the hospital and must stay longer, or if Joe has left the hospital but needs to return later, then be frank, and don't make the situation any better or worse than it is. Being alarmist just upsets people even more. If you downplay major problems, then that can become problematic later too, especially if the person dies.

Caution

One final caution: like any and all websites that provide a service to you for little or no cost, make yourself aware of their privacy notices for use of your email address, the friend and family email addresses you may include, and private information about the patient. There will be a prominent privacy notice posted. They may want to share your email address with advertisers or others. Just be sure that's OK with you before signing on to use the site.

Patient websites are great communications tools that provide good information to everyone who wants it when someone is sick or hurt.

Continue Reading