Personal publishing creating needs-based info sites

Pamela MaunsellWhen Pamela Maunsell of London faced hip replacement surgery in 2009, she did what most patients do. She turned to the Web for information. Not satisfied with what she found, Pamela launched her own site, hip-replacement-and-recovery.com. It’s currently one of the best, plain English information sites out there for information about hip replacement surgery.

I ran into Pamela via Twitter when I informed my followers that my surgery to replace my hip replacement was March 2nd. Pamela monitors a Twitter search feed for the words “hip replacement” and responds, person-to-person, whenever she finds somebody facing the surgery. Her wish is to be a blessing and a source of information and to perhaps solicit a story or two. It’s a smart practice, and one that will become increasing common as people pick up the tools of social media to do business.

Pamela told me via email that she wasn’t satisfied with the information she was given when she had her surgery, and she wants her site to change that.

I’d like them to be able to have an educated conversation with their surgeon — the sort of one where the surgeon looks at them in surprise and says “oh you know a lot about this” and then starts really explaining what’s going to happen and why they have chosen to do X and not Y. I also want to provide resources and ideas about recovery, the sort of aids you need, how to use them and where to get them, and how to do the exercises. I was just given a photocopied sheet of paper and left to get on with it. People also need help with motivation and I’m hoping our growing community will be able to offer support to each other.

This is the kind of information-sharing that is both a blessing and a threat to the medical community, who needs to keep a lock on information in the name of protecting their institution. Consequently, the sites are weak in terms of knowledge. The American Medical Association formed a separate lobbying organization in the mid 90s to make sure that medical information online was kept under the purview of professionals, but that hasn’t stopped hundreds of websites from popping up with anecdotal support information, as more and more people recognize that the needs of the medical community are different than the needs of the patients. WebMD, for example, is filled with sections that offer “questions for your doctor” about your diagnosis rather than providing the answers. This is deliberate.

Pamela says it’s not only the lack of depth on the medical sites but the bias in their writing that makes them largely useless to patients.

My hip replacement came as a total shock. I went to my hospital appointment thinking I was having minor surgery. Next thing I knew I was scheduled for a ceramic-on-ceramic — uncemented hip replacement in 3 months. My surgeon was good but I didn’t even know what questions I needed to ask. I started searching around on the web and most of the information seemed to be of the “A hip replacement is an operation where they replace your hip” type. It was frustrating. The information is out there if you know where to look and are willing to spend hours Googling it up. I’d been signed off work for a month so had plenty of time.

So Pamela put it all together herself and is illustrative of a new breed of information entrepreneur that’s speaking on behalf of people who need the information, not those who benefit by keeping information to themselves.

Her average income per month is £75 (approx $150), mostly from Google ads. She’s happy with that for now, because it covers her costs. But she’s not in it for the money. “The bottom line is that if I didn’t get a single cent from the site, I’d still go on writing it.”

And we’re grateful for that.

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