i Hope that all of you enjoyed your Thanksgiving and wish you all good health throughout the holiday season! - AND BEYOND!
Never become so much of an expert that you stop gaining expertise. View life as a continuous learning experience – Denis Waitley, Author, and Motivational Speaker
As a patient on Active Surveillance, I have found disparate opinions in the prostate cancer medical community, from screenings and biomarkers to Gleason scores to protocols and everything in between. I have seen other patients in quandaries as well.
I have often been frustrated by the amount of contradictory information I have received and the differences in "best practices," so I am motivated to stay on top of the latest clinical research and studies. I include, but don't limit myself to, seeking and reviewing expert opinions from doctors and specialists who adopt their best practices in caring for their patients. If you're a discerning researcher, you'll use Google and other reference vehicles to your advantage in choosing your sources wisely. I recommend seeking out studies and articles from the NIH, often corresponding to trials conducted (go to clinicaltrials.gov), and reports from centers of excellence such as Johns Hopkins, Brigham, Cleveland Clinic, Mayo Clinic, and several others. And then there is the data from outside the U.S. – Europe, and other continents. You may often find videos on YouTube containing interviews and presentations. You can find these videos featuring your targeted doctor or specialist. If you're on Active Surveillance, there is no shortage of information zeroing in on particular aspects of AS protocols.
Support groups - virtual and in-person - remain a comfortable and safe format for many – places to exchange ideas and gain information – as long as you verify facts afterward. Support groups come in many forms. Frequently, however, facts and opinions in patients' posts in forums - especially, for instance, on Facebook, can have the effect of confusing the reader. Any support platform usually contains disclaimers regarding offering medical advice - as I often do in reminding readers not to take what I offer here as medical advice, as I am not qualified to do so. That said, you may hear a "disclaimer," but what follows is someone who gives you medical advice. It can be tricky.
After my initial diagnosis of prostate cancer in April 2018 (two Gleason 6 cores), I was determined to do my research, approaching those I thought would offer me educated opinions. Initially, they were from New York University to Weill Cornell, Memorial Sloan Kettering to Johns Hopkins, and Brigham and Women's Hospital (which collaborates with the Dana Farber Cancer Institute). Now, almost five years later, I know of more resources across the country.
What I’ve written above is all a preamble to how I gradually gravitated towards patient advocacy as a Board Director of the 501c3 Active Surveillance Patients International and volunteer for CancerABCs. I have attended virtual webinars and conferences (some in-person), read dozens of abstracts, watched videos, and kept on top of news alerts from medical and scientific sources. As a peer reviewer for the American Urological Association Prostate Cancer guidelines in April 2022, I learned what the doctors and specialists refer to when wanting to update themselves on specific management recommendations and preferences. In other words, I’ve immersed myself in research; however, I would never call myself an expert; there will always be a learning curve, especially when some research leads to different opinions.
I have found that many patients do not avail themselves of opportunities to research their particular diagnosis and determine the next steps. Understandably, it is a daunting task, especially if you want to live your life either with your family, work, hobbies, or other interests. Self-advocacy is not easy; it was not for me in the several months following my diagnosis. Consulting an advocate during that period helped me organize everything I needed to do with doctors' appointments, lists of questions, understanding my medical records, and more.
As these almost five years have gone by, men (and their caretakers) began contacting me as a source for where to obtain the latest information and, most importantly, how to glean from that data what they needed to know to make informed decisions. As I often state, one size doesn't fit all.
Due to this increase in volunteering my time to patients who sometimes faced immediate choices, I decided to hit the books and discover the nuances of patient advocacy.
Since my last blog post, I studied for, and passed, a 125-question core competency exam administered by the PATIENT ADVOCACY CERTIFICATION BOARD (PACB) to achieve certification for my patient advocacy. Here are the requirements for achieving certification (from the PACB website):
“The Domains of Patient Advocacy:
Scope of Practice and Transparency
Empowerment, Autonomy, Rights, and Equity
Communication and Interpersonal Relationships
Healthcare Access, Finance, and Management
Medical Knowledge and the Healthcare System
Professionalism, Professional Development, and Practice”
“Patient Advocates will:
Provide to potential clients clear, accurate, and complete information about training, education, experience, credentials, and limitations, as well as any possible fees and areas of potential conflict of interest;
Inform clients about the limits of their scope of practice and advise clients strictly within their defined area of proficiency;
Develop clear and achievable expectations with the client to encourage a strong working relationship and productive advocacy;
Obtain, maintain, and protect the privacy of any and all medical records required to serve the client’s needs, sharing them with the client and anyone designated by the client;
Abide by all relevant laws and regulations related to confidentiality of medical and identity information including, but not limited to, HIPAA;
Avoid making any decision for, or on behalf of, a client;
Avoid diagnosing or prescribing any medical/mental health treatment for clients, even if the advocate has additional licensure or training;
Refer clients to qualified alternate professionals if a client’s needs are outside the scope of the advocate’s knowledge or training;
Adhere at all times to the Ethical Standards defined by the Patient Advocate Certification Board (PACB);
Provide a written service agreement to each guarantor and client, both paid and pro bono, that clearly sets forth the nature and scope of services, fee schedule, terms, projected length of the relationship, and the criteria for appropriate termination of the relationship.”
I have posted this not only as an achievement but also to inform patients who may have engaged or are thinking about engaging a Patient Advocate to understand the Patient Advocate’s protocol.
During this period between blog posts, I also attended Cancer ABCs in-person conference in Florida in early November 2022 and found it an extraordinarily valuable experience. While volunteering as an “Active Surveillance specialist,” I also attended breakout sessions on treatment decisions and other subjects and mingled with patients and presenters across the spectrum. I’ve attended only one other in-person conference, and that was before Covid hit. The Fall 2019 PCRI (Prostate Cancer Research Institute) conference was my first in-person event. It was a valuable tool in moving the needle in my education on PCa.
As a patient advocate, I aim to contribute to patients’ knowledge, empower them in their journeys, and help them navigate the healthcare system. As for me, I plan to continue to serve patients who have been diagnosed with prostate cancer and their families and caretakers. My focus includes helping those with rising PSAs (who have not undergone biopsies) during the shared decision-making process with doctors. In addition, I listen to newly diagnosed patients who are either considering or already on the management protocol of Active Surveillance. Many need assistance with or are in the process of analyzing and decision-making regarding their tests, procedures, reports, and protocols. I hope I can assist them in deciding what (and how) to compose questions to doctors and specialists and how to follow up when they still don’t understand something.
At this writing, I am still exploring how best I can help others.