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."

Get a playlist! Standalone player Get Ringtones

Saturday, April 4, 2009

Patients as Partners

I have a possible solution for America's health care woes.

The trademark has finally come through, and basic design construction of the website has started.

This is why I have held back from announcing my idea.

With our illnesses, perfecting the business plan has been put on the back burner.

I want to create this using stimulus money for health care reform. The estimated cost of this proposal: $100,000. This includes design, network interfacing & overall engineering.

Patients as Partners uses the existing health care structure and includes all existing businesses. The idea is to make accessing and using the existing health care system, insurance, pharmacies, hospitals all included, as easily, quickly, and efficiently as possible. Everything is still being used, but using it will be easier, take less time, and require less money.
Very simply put, in the words of Dr. C. Seigal, Patients as partners is facebook patient.

Here is what I do have:


Patients as Partners is an internet based social networking site for patients to manage and organize all aspects needed to cope with disease and facilitate healing. will serve as an internet case manager whereby the patient or caretaker can manage all dimensions of care including, but not limited to, finances, health insurance, disability insurance, income, medical records, radiological scans, blood tests, pathology data, primary physician’s notes, second opinions, specialists notes, and all other providers utilized in coping with disease.
This collaborative online social networking site is created with the goal of expediting patient care and improving health outcomes through global communication between health care professionals and their patients.
Mission Statement
The mission of Patients as Partners is to expedite the process of accessing services associated with coping and healing disease with the goal of greater transparency encouraging the best care quickly and efficiently through easing and/or streamlining the process of securing information needed from all entities involved in the holistic health of an individual.


The objective of patients as partners
Patient Organization will connect patients to other patients through a sophisticated search engine so others in similar situations can share health information and discoveries.
Patient organization will give all patients with the same disease and similar disease processes the same tools to monitor their diseases and track alternative or trial treatments that are being explored among themselves. The results of their explorations will be tallied by Patient Organization specific software that will update calculation upon each new number.
Through social networking online, very similar to Facebook’s format, patients can share their stories, suggest what works, and organize their own trials while organizing health care information and contacts throughout the world.
Professionals will be able to view other professionals involved in the patient’s care and know who is involved in devising a health care plan simply by viewing a patient’s profile page. If professionals sign up, they will be able to contact other professionals to discuss patient process as the patient themselves has reported online. There may also be an email alert feature so if a patient reports an abnormal reading of blood tests, vital signs, or symptoms the providers will be notified (just as friends are notified of other friend’s updates in facebook). This will remove the barrier of communicating with providers from different hospitals and will hopefully ease the burden of finding patients with rare diseases that qualify for research studies. will be created to ease the burden of communication between professionals and patients through streamlining the process using online networking capabilities. It will employ privacy settings so patients may choose who sees their page and who doesn’t, much like facebook, but every person will be able to see the person and their diagnosis upon search.
Upon registration, the privacy policy will be explained and must be agreed to for participation. Participants will also be made aware that Patients as providers will use specialized software to track patient’s answers and ideas that can be sold to research companies, pharmaceutical companies, and hospitals for a fee to turn a profit.
Patients as Partners is created with the objective of making access to accurate health information about diseases, treatments, professionals, and hospitals available easily and affordably. The objective is to use a patient partnership with providers so cures for rare, often under studied, diseases can be researched cost effectively among patients themselves with knowledge from all their providers who care for them.
This will also ease transitions from one doctor to the next as updated medical information will be available via the World Wide Web as updated by the patient or caregiver. Scheduling tools, contact tools, travel tools, budget tools, checklists, and any other health management tool that may help a person cope with any disease process will be used to aid in the assistance of organizing patient information. This is created in hopes that patients will be able to safely navigate the health care system without any “holes” in their care due to difficulty in transitioning from one specialized hospital to another (i.e. Dartmouth Medical to Dana Farber). Both patients and professionals will be able to log on anytime, anywhere to check a patient’s status as reported by the patient.


The ultimate goal of this site is to improve patient outcomes and expedite cures for diseases by erasing boundaries that serve as obstacles to find the best possible treatment modalities for all diseases.
Patients as Partners is devised using the theory that individuals are experts on themselves, particularly in the areas of health, healing, and disease processes. Patients currently function as their own personal health care case managers with the assistance of providers. However, giving patients the opportunity to work as partners in their health care
hence the name Patients as partners.
Patients as providers with employ the theories of “Health 2.0” or the new “patients-as-partners model.”
The high cost of health care in the United States and an overall lack of ability to fund research for rare critical illnesses has forced patients into proceeding with ideas such as this to improve communication among all involved in their care, specifically by coordinating an informal social networking forum where patients willingly sign off on their HIPAA regulations to connect all providers participating in their care.
The current American medical system cannot continue to function as it does, providers often use the person with the ailment as a prop for testing, and ignore the wealth of information they may be able to provide and dissuading the human need for participation in their care by not recognizing patients as being capable of offering insights into their care.
To recruit patients to this organization, Patients as Partners will use the very simple “online patient network” and function through suggestions and recommendations among providers and patients.
Theoretically, patients due to like situations are able to persuade or recruit others who are in the same or similar condition.
Patients are all working towards an absolute, identical goal, and that goal is a cure; however, traditional practitioners are often left out of the additional steps patients take to supplement their health care. Through on online social networking forum, the patient can invite their practitioners to view treatments that have been externally sought and give providers the opportunity to communicate with each other all with the common goal of transparency within the medical field to expedite finding a cure.


Cancer Becomes Me said...

Hillary, your concept sounds fantastic. I know sharing information with other NHL's has been invaluable for me.

Every person is different and everyone reacts differently to the same drug/disease, but yes, sharing what's working through patient care is more effective than these clinical trials.

The majority of people I've met all want to know how I found out I had cancer. The answers for what to look for has saved many people unnecessary grief.

Kudos to you. March on. Let me know if I can do anything.

Anonymous said...

Awesome Hillary ... I've been waiting with great anticipation for you to announce this ... & will wait with even greater anticiaption to see how it comes together. This is an amazing idea & venture ... & what a way to make a difference. You really did get the assignment!! ;o)

I'm so proud of you!!

Know that I'm thinking of you this week ... & if there is anything I can do, I'm a short call & quick ride from the beach.

Stay well & strong girl.

Web Design Quote said...

Great Hillary... I like the way you explain all the thing in the post and the concept is outstanding. In the objective you explain how patient explain their story and get information from the other partners. That is quite good and helpful for them.