So what exactly does collaborative health care mean? When we break this down into categories, there are three main approaches, each with a different benefit but ideally sharing the same end goal: to better improve patient outcomes. First, doctor to alternative practitioner. Secondly, patient to doctor. Lastly, patient to patient.
Years ago, I went through one of the biggest health battles of my life after being diagnosed with granulomatous mastitis (GM). My journey, which led me to become a successful published author with my book, Diagnosis detective: Curing granulomatous mastitis, was the perfect example of using collaboration to find and obtain a cure. My Western medicine doctors—also known as allopathic medicine—simply didn’t have the answers. Here I was with a terrifying diagnosis, feeling hopeless and unsure of my future. My story not only demonstrated the importance of self-advocacy, but also the value of using all three methods of collaborative health care. Ultimately, I was fortunate enough to be in remission now for almost seven years.
While I think Western medicine has a fantastic footprint in helping patients—for instance, I would certainly seek the help of a Western medicine doctor for a broken bone or treating sepsis—I believe there is much opportunity for incorporating other practices of medicine to improve overall patient outcomes with many ailments, symptoms, and diseases. This was the case with me. After relentless frustration at not having answers to what was causing my GM diagnosis, I enlisted the help of a reputable functional medicine practitioner, and I also convinced my surgical breast oncologist to partner with him. Without hesitation, she did.
We utilized both conventional and functional approaches and testing, while universally determining when and how we would incorporate them. For example, my functional medicine practitioner ordered testing that is unheard of in Western medicine, which gave us new perspective and perception.
After a collaborative phone call between the two, my surgical breast oncologist ordered testing at the request of my functional medicine practitioner based on the functional testing results, which meant they would also be covered by insurance. Hopefully, moving forward, we will see and experience more of these still-unique partnerships. My functional medicine practitioner, Jared Seigler, stresses the importance of collaborating with other physicians and shared my case at a seminar he spoke at. There, he indicated how the only person willing to bat for me in the traditional field—someone he didn’t expect to be ordering immune system tests and looking for pathogenic bacteria—was a breast surgeon. I thank my lucky stars for this relationship, as it was a key factor in helping my case with GM.
I have other friends in different capacities also having success with collaborating with other specialists. A girlfriend of mine who is an RNC, but focuses on helping patients with nutrition and metabolic health, shared with me she had a positive collaboration with a urologist on a prostate cancer patient.
As we move forward making new strides in health care, I’m hopeful we will see more of this type of collaboration. Two sets of eyes are definitely better than one, and the same goes for different practices of medicine.
Another type of collaboration is patient to doctor.
I did a significant amount of research to learn about GM, its many causes, and available testing, which—believe it or not—is still quite poorly understood in our health care system. Whether doctors are relying on what they learned 20 years ago in medical school, whether they simply aren’t doing their own independent research (perhaps due to insufficient time), or whether they are just unfamiliar with the unique testing options often required in GM cases—traditional testing methods have proven over and over again to be unreliable at identifying certain microbes responsible for causing the disease.
As my surgical breast oncologist, Dr. Kelly McLean, stated in my book, with her busy clinical load, she could have never put in the time and effort that I dedicated to finding answers.
So that leads me to believe our health care system has opportunities for improvement, starting with patient load management. I might add I’m not pointing the finger at doctors when I reference this, as I believe their networks play a majority role in that. Rarely does a patient receive even 20 minutes with a doctor, and that’s in the proven data. Simple math demonstrates the minimal time doctors have to fully help patients in the way they deserve and need. I could have never, ever accomplished what we did in 20 minutes.
While I am forever grateful for a breast specialist who was open-minded to listening to the findings from my research and open to then ordering non-traditional testing—which, I might add, finally gave us the answer to what was causing my GM after seven months of suffering—it should have never been my responsibility as a patient to uncover what we needed to do.
This patient-to-doctor relationship, however, was more than just a benefit to me. My breast specialist also stated in my book that what she learned from me she now carries forward to other patients, with more confidence and insight into the disease process than she had prior to knowing me. She indicated she couldn’t have helped me if she hadn’t worked with me. She said she also learned an immense amount from me too. If doctors don’t have the time outside of a clinical setting to help patients, then this is a prime example of how doctors partnering with their patients can produce desired results. Just make the time to listen. It’s sometimes that simple.
I was even given an opportunity to help other doctors and specialists from all over the world after being invited as the keynote speaker at the 2021 Universe Conference of Breast Pathology and Breast Cancer. It’s so rare to think a patient, never having taken a medical course in her lifetime, would be such a speaker.
I’ve also collaborated with other specialists one-on-one across the world. A specialist in Argentina found me online, and we later connected to share information and research on GM. We gained new insight and learned from each other. His clinic has had over 100 cases of GM, many being the same cause as mine. Later, we co-hosted an online seminar for members of my support group, where they could ask their most puzzling questions. We can all learn from each other if we just open our minds and hearts to do so. Time should never be a roadblock when it comes to patient care.
Lastly, is patient-to-patient collaboration.
No one will ever understand a disease more than someone who lives or lived through it. This is the case with my support group for GM. We have all learned so much from each other, and many times we were the ones who helped others get the same answers I did after their doctors’ failure to do so.
A very universal finding with this disease is the intense absence of wound care expectations, lacking guidance and instructions from doctors for those battling GM. So we as patients are the ones often sharing this information with others. But we have lived through it, so we are probably better experts on the topic—on what works and what doesn’t.
Our support group has been such a wealth of information, especially when so many suffering feel dismissed by their doctors, or when their doctors’ knowledge of the disease is lackluster. Time and time again, I have personally helped so many other women get the answers they needed, which helped them to finally get on the right treatment plans.
The last thing we want is unnecessary and expensive procedures, like a mastectomy—which I was facing—if by identifying causes we can cure the disease. We are also our own best advocates. This is something many of us stress in our online group, especially with the complexity and poor understanding of the disease. We have found you must ask to receive and fight for what you need if you don’t receive it.
We had a member of our group undergo an unnecessary mastectomy when all along she had a bacterial infection never detected in routine tests. This is a bad, but prime, example of what we can avoid just by patients sharing what they know with each other. Not only did a patient lose her breasts, but she is left with unbelievable scars and a much higher medical bill than if she had had the right answers all along.
The world continues to evolve, and with that, our health care system can too. Collaboration can be a great thing if we are just universally open-minded to it. You know what they say about a TEAM: Together, Everyone Achieves More. This approach could be both the answer and future of health care.
I hope for other changes too, however, like a streamlined approach for managing GM as outlined in my book, more root-cause medicine practices, doctors having additional allocated time with patients, more prevention education—because preventing a disease is certainly better than having to treat one—and I’d love a point in time where insurance companies also cover the costs associated with other practices, like functional medicine. I believe you can currently use an FSA or HSA account, and some insurance companies cover services at the Cleveland Clinic for Functional Medicine, but let’s allow patients to stay in their hometowns to seek functional medicine services. After all, some people get too sick to want or be able to travel.
To me, all this demonstrates how we can all work together, put health back into health care, and let doctors be doctors again.
Tami Burdick is a patient advocate and author of Diagnosis Detective: Curing Granulomatous Mastitis.
