Tag Archive for Patient Advocacy

When Personal & Professional Collide

There have been situations in my career when I wish I knew less and when I wish I knew more about pathology and laboratory medicine.  Typically both of those emotions arise when a personal situation collides with my professional world.

A very close friend of mine just had a miscarriage when she was 13 weeks pregnant.  During this sad and emotional time she was faced with a tough decision.  Did she want to have the fetal tissue tested after her D&C for chromosomal abnormalities? Her OB said the fetal tissue would be sent to pathology either way but further testing could possibly answer the question as to “why” she miscarried.  The word “pathology” stuck with my friend and since she knows what I do she called me for advice and for my opinion on whether she should have the testing done.

I was deeply concerned and sad for my friend.  Although I wanted to help her I knew there was no way I could (or should) answer this for her- it had to be her decision.  But one thing that was obvious was my friend needed more information and a medical professional she could talk to.

I believe that medical professional should of been a geneticist, pathologist, or someone affiliated with the lab.  Lab tests are often just ordered, or if presented to the patients as an option, the ordering physician typically do not know enough of the facts on the test to answer questions beyond generalities.  In the case of my friend I think the answers to the following questions may of helped her:

  • What exactly is cytogenetic testing and what exactly will the test tell me?
  • How is the test preformed?
  • Who does the testing? Is it done in a lab here at the hospital or sent out?
  • Who reads/diagnoses the test results?
  • How accurate are the results? Are false positives or inaccurate results possible? If so, how possible?
  • Does insurance cover this test?

I am going to guess her OB would not have known the answer to these questions, but someone in the lab would or should! The day before my friends D&C she received a telephone call from her OB and an Anesthesiologist to prepare her for the procedure.  What if someone from the lab had called too to go over the pathology and testing options?  Would that have helped? I’m guessing so!

We need to transform the model of care in the lab to include a proactive approach to diagnosis and testing rather than just reactive.  From a business perspective I’m guessing the lab would prefer patients to order cytogenetic testing.   To increase orders for the right lab tests and to decrease the blind useless ordering of other tests, labs and their physicians must step up!

In the end my friend decided against the cytogenetic testing.  Her lack of understanding of the tests and fear of a gigantic bill when insurance denied the claim caused her to decline the testing. Yet the tissue was still sent to pathology.  So somewhere in some lab there are glass slides with fetal tissue from my friends baby.  Will she ever know the pathologists findings? Probably not, but she should.

Anyone Can Benefit From Knowing More

It’s true, anyone can benefit from knowing more!  Knowledge is power, even in the confusing world of healthcare.  I have talked about this before in my post Go Above And Beyond The Dx: Participatory Medicine.  I firmly believe that the blind faith patients have in their doctors and the healthcare system is a major problem.  Doctors “practice” medicine; they are not perfect.  Everyone has the right to ask questions or search the internet for more information. But what if a doctor proactively came to you and explained how they achieved their diagnosis and why they support a certain treatment option? What if they could show you pictures (maybe whole slide images on an iPad) to support their findings?

Well that is exactly what Dr. Jennifer Hunt, Pathologist and Dr. Lori Wirth an Oncologist at MGH are trying to do and document in a new study.  The study will track the value of a pathologist providing patient consultations.  I just finished reading about it in the November Issue of CAP Today, “Face Value- pathologists one on one with patients.” The article discusses the vision and preliminary experiences of the study.  There are several statements I love in this article, but my favorite comes from Dr. Hunt who answers the question Is this for everyone?

The “yes” argument is that any patient can become more knowledgeable about his or her health care.  It’s not about the patient being smart; it’s not knowing nothing or knowing everything about your disease.  It’s the idea that anyone could benefit from knowing more, and working more closely with their clinician- which includes their pathologist.”

Bravo! This is exactly the type of transformation we need and a wonderful example of Participatory Medicine.

As for me, I have chosen to act on this belief by volunteering for a patient advocacy program at a local hospital in Denver called the Reconnect Leadership Project.  I have just finished my training as a Reconnect Leader and will start working with patients next week.  The goal of our program is to reduce readmission rates to the hospital and empower patients to take charge of their health.  Patient engagement is another thing (in addition to digital pathology) that I am very passionate about.

Once again, I applaud the work of Dr. Hunt and Dr. Wirth.  I cannot wait to see the results of this study!

Go Above And Beyond the Dx: Participatory Medicine

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

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