Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Friday, April 8, 2011

Cancer patient envisions website to help better coordinate care

With all the "excitement" this week, I never got around to mention my media blitz on Monday that outlined my Patients As Partners idea.

Yes, that dream is still floating around, a little closer to reality, but still a lot of work in the making. 

I've forfeited the idea of including the government.

Silly, naive me thought they could accomplish something truly avante-gaurde and life altering before I die. They were moving just a little too slow. 

At least, I have finally found  partner who may see this to fruition if I do not.

Here is some information below if you're wondering what I always have in the works in my heart and in my head.:

Hillary St. Pierre: Turns her experience with the weaknesses of the medical system into an effort to bridge the gaps. 


Union Leader Correspondent

 — Being lost between the cracks is not a great place to be at any time, let alone when you’re too sick to get through the day. 

But that’s where Hillary St. Pierre found herself during one of the many fights she has fought with her cancer. She was switching hospitals. One doctor thought the other doctor was going to do something and vice versa. She could have died if she’d been sicker. Other people do.

“What I didn’t realize is, when you get very, very sick and you go to get a second opinion, what you do is you leave your doctor and you go see another doctor … but then it’s your job to tell your doctor what the other doctor said,” St. Pierre said in an interview with the New Hampshire Union Leader. “The doctors never communicate with each other. All of a sudden you feel the worst you’ve ever felt in your life and you have to learn Japanese. Their lingo is a foreign language.”

So St. Pierre is in the process of developing a website that actually gets medical teams and patients talking to each other, essentially filling in those cracks.

She recently won a $5,000 grant from the Cameron Siemers Foundation for Hope to get her site up and running.

“The reason her idea is different and so special (is because) it is a combination of multiple existing healthcare sites (that )functions as an online case
 managementsystem,”saidJennie Drewno, executive director of the Cameron Siemers Foundation For Hope. “This will allow both patient and providers to access information about the patient online, making the process more transparent, and allowing patients to have their independence.” 

Drewno said Life Grants are awarded to young adults who are making a difference in their families and communities.

“Hillary is someone who embodies what the Cameron Siemers Foundation For Hope is all about, Inspiring Hope and Possibility in young adults living with life-threatening illnesses,” she said.

St. Pierre is 28, has Hodgkin’s lymphoma and has been sick since 2006. Instead of having a third bone marrow transplant — which might eradicate the disease but also might kill her — she decided instead to go through other minor chemotherapies. That means her cancer comes back and it most likely always will. It also means she’s at the hospital and with doctors, a lot. She used to use a system of notebooks to keep all her doctors, meds and information straight. Now she has people who do it.

But not everyone has that luxury — she didn’t always — and when she didn’t she fell through the cracks, she said.

Her idea, called Patients as Partners, will be an online electronic case management system. Her idea combines aspects of existing sites including Dartmouth Hitchcock’s “Patients Online,” patientslikeme. com, Facebook, and The Mayo
 Clinic’s online case manager, St. Pierre said. 

Many hospitals have or at least talk about creating an electronic medical record for patients. But the problem, St. Pierre said, is that each hospital is trying to have its own individual, often expensive, system.

But St. Pierre’s system would be online and would enable any doctor, specialist, nurse practitioner, nurse or case manager to access a patient’s case history. Doctors would also be able to talk to each other through notes left on the case or through a chat function.

What her social network does is get all the players in one room, albeit virtual, to talk to each other. Which, surprisingly, she said, they don’t currently
 do. There is currently no formal means of connecting providers treating the same patient at different locations, St. Pierre wrote in a presentation about the project. 

“The information a patient receives in a consult is often left to be transmitted by the patient, a lay person,” she wrote.

But with the site, “Any emergency department could access key information, such as primary medical providers, medical conditions, and current medications through typing in a patient access code (similar to a Social Security number),” she wrote.

She went on to explain that organizing and streaming information online “would also provide a safety net of information for a patient between practitioners to avoid medical errors which often result in costly treatment due to variables such as a patient forgetting to report a certain medication that was prescribed by another physician.

The physician will have the ability to see the notes of the provider if desired.”

Doctors would also be able to search the country for doctors treating patients with similar ailments or symptoms. This St. Pierre hopes could lead to better, more effective treatments because doctors can actually talk to each other about what works and what doesn’t. It could also mean cures, she hopes.

If nothing else, people with complex cases would have all their information online so specialists could peruse what primary care physicians have already found or done and specialists
 can share his or her own new information. 

Billing specialists, insurance companies and pharmacies could also be included in the mix, “all which currently collaborate on one patient but have no means of effective, efficient communication,” she said.

“Streamlining communication among these entities would improve efficiency, thereby lessening the time spent on each patient doing the same work and lowering costs,” she wrote.

She said the site could also be a place to manage appointments and billing.

St. Pierre said once the site is up she will run the endeavor as a non-profit funded through advertising on the site.

Recently, St. Pierre’s cancer returned and her kidney failed. She’s in the process of getting her kidney in order so she can continue with her cancer treatments. She said she realizes she may not get to see her project come to fruition, but will work on it as long as she can. And when she can’t, she has people who will see it through for her.

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