By Deirdre Baker, OCHIN Patient Engagement Panel (PEP) Member
The project is called “ACCESS”. That’s an acronym for Accessing Community Cancer Care after Insurance Expansions. I imagine that inventing clever acronyms is one of the few creative outlets in the otherwise highly regulated and technical field of science research.
ACCESS is a statistical study. Researchers will gather a lot of data about the health outcomes of patients who receive cancer care services, such as screenings, tests, or treatments, from clinics within the ADVANCE network. ADVANCE, stands for Accelerating Data Value Across National Community Health Center NEtwork – you see what I mean about the acronyms? I think that naming studies must be fun. Some clinics within ADVANCE are in states that did expand Medicaid under the Affordable Care Act, and others are in states that did not. The purpose of the study is to answer the question, “What impact, if any, does expansion of health care coverage to previously uninsured populations have on rates of morbidity associated with carcinoma?” Or, in the vernacular, “If you allow more people to have access to cancer screening and other medical care services, do they get better care and have better health outcomes?” Good science takes time though, and finding the answer to that question will take months, if not years.
In the summer of 2016, I attended one of the ACCESS planning meetings. It seems that carrying out scientific research is a bit like erecting a skyscraper. This is because both endeavours require that a lot of people spend a lot of hours drawing plans, raising funds and applying for permits before any visible progress takes place. The bit that we, the public, see is actually the end-point of a process that may have begun years before. At the meeting that I attended, the researchers were discussing the scope and limits of the study. For instance, would they examine the statistics for all cancers? Or, would they look at one specific cancer? Breast cancer and cervical cancer were proposed as foci for the study.
The focus and scope of the study are important. The data that you choose to analyse will have a profound effect on the results that you find. For instance, according to the Centers for Disease Control and Prevention, thyroid cancer usually lends itself to successful treatment. The five-year survival rate, which is the percentage of patients who are still alive five years after receiving a diagnosis, is about 97%. Cancer of the pancreas, on the other hand seems to be resistant to treatment, which is to say that most of the time it will grow, spread, and kill the patient even if it is caught early, and no matter what remedy the doctors try on it. The five-year survival rate for pancreatic cancer is only about 8%. So, if your study focuses on thyroid cancer, it will appear that giving prompt, affordable screening and treatment is saving everyone, whereas if you focus on pancreatic cancer it will probably seem as though screening and treatment make no difference. The truth about the overall state of cancer care in America probably lies somewhere between the two extremes.
“Okay,” you may be thinking. “So, why should I care about ACCESS?”
Well, in part, because ACCESS isn’t just about poor people with cancer. It is about whether spending taxpayer dollars on wide-spread cancer screening and cancer testing programs can be effective. If such programs are effective, we can look for ways to maximize their efficiency and their use. If such programs prove ineffective, then we need to look at other methods of intervention. And, in part you should care because, as Gautama Buddha told his followers about two and a half millennia ago: “All things are impermanent and subject to change.” You might experience cancer yourself, or you may experience it indirectly, when it affects a family member or other loved ones. But, no matter who you are, or where you are, there is an excellent chance that cancer will affect your life at some time and, just as physical health can change, so can financial health.
None of us can know what the future holds and none of us can prevent cancer from ever happening. What we can do is to look for ways to make cancer screening timely and affordable, to develop better cancer treatments, and to make best use of the treatments that we have available now. But, in the meantime, the lives of those around us: our neighbours, friends, co-workers, and loved ones, are being affected by cancer. It makes sense to take an interest now in exploring what are the best ways to deliver that care.