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Patients Building Communities Online

Posted by | 12:55am on Wednesday, December 17, 2008

Fortunately, in recent years, there have been some great uses of technology that truly support the lives of patients and their families in these situations. 

Computer2Computer2With the holidays quickly approaching, it’s important to remember those who won’t be gathering with loved ones or feeling much cheer this season. Patients and their families – stuck in hospitals or recuperating at home – may be feeling isolated and out of touch.

Fortunately, in recent years, there have been some great uses of technology that truly support the lives of patients and their families in these situations. Two sites in particular stand out as ways for patients to stay in touch with their friends and family across the world.

CaringBridge allows patients (or caregivers) to create free personal websites about their disease. Patients have full control over their privacy levels and can restrict access to any number of people they prefer. The site is not searchable, so patients’ privacy is secure. The website operates as a 501 (c) (3) non-profit, so donations are tax deductible.

Similarly, CarePages allows for the creation of free patient websites to update friends and family members. Privacy is protected by a registration process and each website manager personally approves each visitor before they are able to view that particular site. CarePages is a for-profit organization and offers branding to supporters, often hospitals, in order to give the service to patients at no charge.

Both of these sites allow patients and caregivers to focus on the healing process, rather than the burden of keeping friends and family updated. It takes just minutes to create a personalized webpage where patients can update their online journals and inform loved ones about their progress.

Plus, it facilitates two-way conversation. Guests are able to leave comments and otherwise encourage a patient’s recovery.

Recently, a close friend of mine ended a long battle with complications related to Bile Duct Cancer she had suffered five years ago. Going through this process and reading the heartfelt postings from all over the country was helpful. I could check on her status whenever I needed to without disturbing anyone.

I hope you’re able to spend the holidays with your loved friends and family.

(Image courtesy of genezkool323 via Flickr)

Update: Post was updated on 12/18 to correct business structure of CarePages.

About Wendy White

Since founding Siren Interactive in 1999, Wendy has been recognized as a thought leader at the intersection of niche pharma brands, patient empowerment and online marketing. Her vision for how the internet can facilitate interactions and provide crucial information that patients, caregivers and their healthcare providers previously struggled to find has propelled Siren to the forefront of relationship marketing for rare disorder therapies.

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    16 December 2008 at 7:12pm
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  • http://www.CarePages.com Erin McDaniel

    Thanks, Wendy, for mentioning CarePages.com to your readers! We appreciate your analysis and helping to spread the word about our service; we hear from our members daily how CarePages helps them with their health challenge.

    I just wanted to clarify a few things. CarePages offers three privacy options. The most private is the option to approve each person who requests access. All of the CarePages privacy options require registration to view the page, allowing each manager to know who has visited their website and how many times – even if they choose not to leave a message.

    CarePages.com is not a 501c3, however, we do have a CarePages Foundation that is a non-profit entity. The Foundation supports efforts dedicated to meeting the emotional needs of patients and their families.

    The CarePages service is always free to our users and members.

    Please let me know if there’s more information we can provide regarding CarePages. I look forward to following your blog as well!

    Erin (from CarePages)

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