It is time; time to change how you give a diagnosis.

Participatory Medicine, defined by the Society for Participatory Medicine, is a cooperative model of health care that encourages and expects active involvement by all connected parties (patients, caregivers, healthcare professionals, etc.) as integral to the full continuum of care.  The patient role has evolved, therefore the role of a pathologist must evolve too.  Pathologists must start to go above and beyond the diagnosis and become a key advisor to physicians and patients on the prevention of disease, therapeutic treatments, and the progression of disease within patients.

I have written a post before about my dad, a resident of Colorado, who had a liver transplant in August 2009 at Cleveland Clinic (CC).  As soon as he returned home to Colorado, he had to have bi-weekly blood draws for review by his clinical care team at CC.  The initial plan was for my dad’s family medicine office to do the blood draw with kits that were shipped from the Cleveland Clinic’s lab, and package them up in a pre-paid envelope (also provided by CC ) and ship them back to CC’s lab for analysis.  The turnaround time would be about 36-48 hours for the result, plus the cost and risk of shipping the blood to CC.

After trying this out and realizing it was a logistical nightmare, my parents decided to have all the blood work done by the University of Colorado lab, which would post the results within 8 hours to their hepatology patient care system.  My parents could then simply access the results securely online, print and fax them to Cleveland Clinic.   This new process brought the turnaround time to 8-12 hours; saving 24-36 hours over the original method.  Overall, a great example of participatory medicine!

In Pathology, the use of a participatory model is a greater challenge since pathologists rarely interact with the growing numbers of patients they diagnosis everyday.  However transformation to a new model of care must be accepted, and the College of American Pathologists (CAP) has two programs “Transforming Pathologists” and  ”Every Number Is A Life” where the evolving role of pathologists and value of pathology are being advocated for.  CAP says on the transformation website,

…As health care changes quickly and on all fronts, Pathologists must step up and embrace transformation, pursue new roles in the workplace, and re-position themselves as the center of the clinical care team.  This is an urgent call to action and we must take action now. If Pathologists are to survive, we must adapt….Pathologists must have an understanding of their changing role – they must NOT be defined by the tools they use. We have a bright future as researchers/innovators, test providers, interpreters, clinical data integrators, clinical consultants, business developers and practice leaders.

However, pathologists often do not know where to begin.  Try these steps:

1. Identify two or three cases where your role as diagnostician is crucial to the patients care and outcome
2. Arrange a meeting with the primary physician for that patient
3. Discuss your involvement with the clinical team and how you would like to engage with the patient directly
4. Follow through! Do what you say you are going to do. Build credibility with the clinical team and your patients
5. Document your successes and struggles and think about ways to make the process better
6. Share your successes! Click here to share
7. Repeat the process

Proponents of the participatory model of care believe that adoption can increase patient satisfaction, save time, reduce costs, improve care, and lower liability risks for physicians.  Although change is difficult, pathologists must seize the opportunity they have been given! It is time, time to go above and beyond the diagnosis.

In the middle of difficulty lies opportunity.

~Albert Einstein

Are you a patient who has a great story about a pathologist? Share your story today! Click here

Want to learn how to become an organ donor? Click here

A great read on participatory medicine by American Medical News- Participatory medicine:  A high-tech alliance with patients

Organ donation became a very important part of my life when my father was diagnosed with end stage liver disease (ESLD) in August, 2007, only two months after he retired.  ESLD is an irreversible condition that leads to complete failure of the liver.

Once diagnosed with ESLD, my dad’s quality of life decreased and his MELD score, a numerical scale used for liver allocation, rapidly increased.  Fortunately, my dad was a candidate for liver transplantation, and was accepted onto the Colorado transplant list in early 2008.  However, my dad did not get his transplant in Colorado where he had received his routine care for over two years. It was Cleveland Clinic and an unknown donor that saved his life.

But why did my dad have to “shop” (multi-list) for a new liver?  There are three main reasons:

1. The processes of the United Network for Organ Sharing (UNOS) and Organ Procurement and Transplantation Network (OPTN) are flawed
2. We do not have enough registered organ donors in the United States, and for my dad, within the CO region
3. There are different decision methods used for what organs are “viable” for transplant.  These decision methods vary from hospital to hospital.

UNOS encourages transplants centers to advocate multi-listing, however, very few transplant candidates do it.  The topic of multi-listing became hot when Steve Jobs, CEO of Apple, received his liver transplant in Tennessee, even though he lived in California.  The fact is organ transplantation is not a fair and equal process, and as a result, multi-listing is necessary to save lives.

My parents do not have wealth and fortune like Steve Jobs, but they still multi-listed.   How did they do it?  They made a commitment that they would do whatever it takes to save my dad’s life.  That included doing lots of research, pushing on their insurance company, and taking a BIG risk both financially and with his life.   Overall, the multi-listing process was much easier than they ever thought it would be.  Within 30 days of joining the Ohio transplant list, my dad got his liver.  If he had not multi-listed, he would either still be waiting or have died waiting here in Colorado.  My dad is 3 months post transplant and doing great.  It’s a tough recovery road, but a road that leads to jam sessions on the drums with his granddaughter, hunting with his brothers, and Harley riding across our country with my mom.

Anyone can be a potential donor regardless of age, race, or medical history!

Learn more & sign up @ www.donatelife.net