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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Tuesday, July 21, 2009

Today's Good News

I HAVE GOOD NEWS TODAY!

My neck isn’t swollen anymore! I have no signs of cancer!………………………………..

………………………………..

HA!!!

That was just a sick joke!

Get it? Sick joke, from me, the sick person.

The news is not THAT good, but I have really wanted to say those words.

I had to get it out somehow, even if it is in a morbid, heartless joke.

You will just have to keep praying for that cure and remember me on Thursday, the day my biopsy is tentatively scheduled at Dana Farber in Boston.

I will have the exact time and date today sometime.

The good news still is pretty good even though it has no bearing on my health status.

I’ve just been so busy and overwhelmed by the events of the past week that I haven’t gotten around to posting (or preparing).

Actually, I’ve been running around like a mad woman coordinating soccer games, basketball camp, unpacking after camping, doing laundry, fixing up portions of the house (I do this when I’m under extreme stress), decorating (This goes with the fixing. I can’t stop a project that is half done.), and making art (Also, part of fixing and decorating, but definitely a coping mechanism).

As you may be able to tell, I try to control my surroundings, especially my house, when my body does terrible things and goes haywire on things. At least when I get home from treatments the place will be serene.

Thanks Jake for coming over and fixing the wholes in the mudroom walls.

To everybody else, they didn’t get there by kicking or punching, we had a puppy five years ago, Kaiser, that passed away of a congenital liver defect that liked to eat drywall, hence the holes.

Good news is. . . . . .

I have a meeting with the Chief Information Officer (CIO) of The NH Department of Health today regarding my Patients As Partners Idea!!!!

I have a big political meeting today to try to cure the woes of the health care system and help providers and patients alike unite!

I feel very surreal.

I still can’t quite decide if the Senators who have been so supportive of this idea (Thank you D’Allessandro, Sgambati, and O’Dell) are just humoring me since I am so young and sick or are really interested in seeing my plan to fruition.

With this being my first political meeting ever, I’m not sure what to expect, but Peter Ames, Director of Public Relations and Advocacy for The American Cancer Society in NH, has given me an outline and words of encouragement. He appears well schooled in coordinating advocacy and meetings on behalf of new, innovative ideas.

Unfortunately, He has a conflict and can’t make our meeting.

I won’t have a crutch to lean on, but I don’t think I’ll need it.

My father, Victor, will be joining me as my chauffeur and perpetual partner.

Again, if you are unaware of my big Patients As Partners plan, I will summarize it for you: Patients as Partners is an online social networking site that will function as an electronic case manager and organizational tool to formally connect health care providers and patients to ease access of care and transmission of information thus streamlining processes making them more efficient to control costs of care.

Are we all clear?

Of course, there will be many questions.

I have made a cheat sheet of key points:

Patients as Partners will function as an on-line Electronic Case Management System that combines components of major existing sites including Dartmouth Hitchcock’s “Patients Online,”patientslikeme.com, facebook, and the mayo clinics online case manager.

The primary difference of this site, despite that it would combine these all ready successful sites, is that it would include participation of health care providers from multiple hospitals. This includes Specialists, Primary Care Doctors, Nurse Practitioners, nurses, and case managers which could network online between each other regardless of their location about patient consults.

There is currently no formal means of connecting providers treating the same patient at different locations. The information a patient receives in a consult is often left to be transmitted by the patient, a lay person.

People with complex care cases that all ready use DHMC’s Patients Online would be able to integrate their health information and information from specialists at outside hospitals for their primary doctors to view at their leisure.

This would be a step towards ensuring patient safety when “between” providers, whether without insurance or in the process of transitioning, hopefully preventing patients from going long periods avoiding health care, allowing treatable problems to become overwhelming and costly to treat. It would be a step closer to prevention of chronic problems than the current model of patient’s waiting to be treated once illness has become emergent or chronic and costly to treat.

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.

Participation would not need to be limited to solely health providers but could also include billing specialists, insurance companies, pharmacies, etc., all which currently collaborate on one patient but have no means of effective efficient communication.

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

It would also lessen the information asymmetry gap by providing approved, qualified information to patients, which was proven to save American consumers one billion dollars yearly in the purchase of term life insurance in 2002 in a study published in Political Economy.

The site would be self-sustainable once created maintaining revenue as a non-profit through advertisements.

The site could also be expanded eventually, but immediately work for participating patients as a rudimentary on-line medical records system by having all approved information in on place accessible on-line via the world wide web. 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).

The site would also have the capacity to be elaborated upon beyond social networking to include database management through SQL or SASS that could acquire and organize health information to study how to best treat patients, improving quality of care for patients and creating protocols for disease that would contain costs and avoid costly testing that is deemed unnecessary.I do think Patients As Partners, from a health care reform perspective as well as from a business perspective, could, not only contain health care costs through streamlining processes, treating complex care cases early and efficiently for the best care outcomes, easing accessibility to care thus avoiding expensive emergency room visits and encouraging regular health check-ups, avoiding preventable medical mistakes due to communication errors, but it could also offset some of the cost of implementing healthcare reform to provide insurance coverage for all statewide.

This is my cheat sheet, but I have to move on to the real thing. Wish me luck!

7 comments:

Anonymous said...

Good luck today, Hillary. With your enthusiasm and experience you'll do fine and they should be hanging on your every word. I'll be thinking of you. Chin up!
Eileen

Anonymous said...

Hillary --- GOOD LUCK!

Marleigh

Daria said...

Good luck girl!

Anonymous said...

Hillary, I can't wait to hear how you made out...I bet per usual you WOWED them...you are one amazing woman. I think of you all the time......

Erica said...

this is a great idea. my pulmonologist was complaining just yesterday that he never gets information from our other drs. this will be a great way to make sharing information so much easier. if this is open to people everywhere, i'll definitely be signing up. hope the meeting went well.

Anonymous said...

You go girl!! Unless they are totally stone stupid, they will be dazzled just like the rest of us. I think this is a huge undertaking that will make a difference to a lot of people. So keep going ... stay strong ... & know that a lot of us are behind you.

F

Anonymous said...

Good luck at Dana Farber tomorrow Hil! I'm praying it goes well.

Love,
Nic