After writing a post regarding women and our role as practitioners and as those who should encourage patient autonomy, a few readers commented asking about the policies that have been implemented to ensure this.
Now being a Canadian studying in the United States, I thought it only fair that I write something from a North American standpoint. Much of the information presented will incorporate facts and data from both countries. So without further ado:
“Fundamentally, the answers to our challenges in healthcare relies in engaging and empowering the individual. They need access to information in order to do so.”
~ Elizabeth Holmes
A few years ago, when I’d first moved to the U.S., I’d heard about a woman making strides in the health care industry. Elizabeth Holmes, a young entrepreneur hoping to (and I think she is) break down barriers between a patient knowledge and practitioner knowledge. Essentially she is looking to increase patient autonomy.
What struck me the most about Holmes was her tenacity. She had applied for close to 100 U.S. patents and well over 100 foreign patents for her design for preventative medicine to allow patients to learn about their health with a few drops of their blood.
You may have read about Holmes in Forbes 50 and so on, you’ll see that she is one of the youngest self-made females who’s amassed a ton of criticism as well as money. Well, of course. I’m not surprised that some would focus on the fact that her voice is deeper and that her ideas are non-conventional. Last I checked, going with the flow didn’t break any boundaries.
Throughout this post I intend to inform you of the ways in which patient autonomy is present (albeit ever so slightly) in health care policy. I also intend to provide examples of how women (such as Holmes) are promoting the concept in order to increase knowledge and health care literacy.
In order to make this post coherent I’ve primarily separated health care policy and patient autonomy from women and their role within that realm.
Health Care Policy & Patient Autonomy: Pre-existence
Health care policy is moving away from the paternalistic standpoint and moving slowly towards autonomy. Policies are already in place both in Canada and the United States, there is the idea and the premise of patient autonomy. Health care literacy is abysmal, as most patients don’t understand what their doctors want them to do or why. Patient autonomy is present in policies yet there seems to be little encouragement of it as depicted by the info-graphic below.
An article written by Mark A. Rothstein pointed out that indeed autonomy was incorporated within the documentation of Personal Health Records (PHRs). Which was a way for patients to play a more integral role in the management of their health.
Furthermore an article published by The Milbank Quarterly documents the transformative stage of health care. Now, health care in Canada is publicly financed but privately administered, and in regards to patient autonomy there is only the “right” to choose your own family physician.
In both countries there are policies regarding the right to access test reports, in the U.S. it is stipulated in the Clinical Laboratory Improvement Amendment, while in Canada it is incorporated in their community health care centers in order to increase preventative care.
Women: Influence in Health Care Policy
There are few examples of women taking steps forward to advance patient autonomy regarding health care policy. I’ll touch on a few (not representative of the whole) in the following paragraphs.
Holmes’ above statement couldn’t be more true. Educating the public is not a way, but the way of revolutionizing the health care industry. Holmes is also the co-author of a bill allowing patients to order blood tests without a prescription. This bill has allowed patients to own their health.
An article written by Cynthia Koons and published by Bloomberg.com cited LabCorp’s business-to-consumer model, wherein patients are able to receive tests without having to visit a service center at all. Health literacy is increasing due to policies and companies such as LabCorp. Devices like the Apple watch and the FitBit are also making waves. But we’ll save that for another post.
Koons also referenced Erena DiGonis, a licensed clinical social worker and health coach in the United States, who ordered her blood work online when her specialist wouldn’t run tests for her thyroid condition. DiGonis stated that she is “taking back her health” when she knows “where things stand.”
Elizabeth Dawes Gay, also believes in taking back health in terms of a reproductive nature. Gay, a senior associate at Reproductive Health Technologies Project, advocates for autonomy specifically for women patients seeking health care. Gay states that “…we must move past policies that punish women and on to polcies that support reproductive decision making.”
In Atlantic Canada, a women leadership movement awarded several women who are making strides in the private and public sector services regarding both influencing and advocating for health care policy.
Two such individuals are Donna Shreuer and Dr. Judy Caines. Shreuer had been diagnosed twice with breast cancer and found that both times confusion ensued due to a significant lack of support and information provided for her as a patient. She partnered with Dr. Caines, the Medical Director of the Nova Scotia Breast Screening Program, to develop a pilot program providing information to newly diagnosed breast cancer patients. This program has since been known as The Pink Rose.
Since then information packets have been required not only for breast cancer patients but for newly diagnosed patients of any type of cancer. These are known now as Patient Information Packets (PIPs).
It is clear that patient autonomy is remotely present in health care policies and women both as patients and doctors and business owners have been advocating for more of it. While having some patient autonomy presence in health care policy is preferred, there is still a long way to go.
Yes, we’re advocating for more information to be available, but do patients know what to do with the information?
Despite the movement from individuals such as Elizabeth Holmes and Donna Shreuer, it is important to note that health care spending has increase over the past two years. According to the National Expenditures 2014 Highlights, spending increase 5.3% which roughly comes to an average of $9523 spent per person.
- Due to the lack of knowledge and health care literacy, there is a surplus of spending on unnecessary repetition and processes involved in health care.
Arthur Caplan wrote about the use of information and how it could also reduce the amount of rigorous procedures concerning FDA approvals. Caplan states that the “primary goal regarding the provision of information in health care is to permit patients to make informed, knowledgable decisions about preventative, therapeutic, experimental, or palliative health care interventions…” The public wants to grab hold of their health much like Erena DiGonis, but what occurs when they don’t know what they’re testing? Caplan’s point is that the information needs to be more than just thrown in a patient’s direction. It must be presented in order for them to comprehend.
In the book, Readings in Health Care Ethics, it is noted that “…we need to look at specific decisions as well as the context that influences and sometimes limits those decisions…”(pg. 22). There is a need to understand “the ways in which a person can be encouraged to develop (or discouraged from developing) the ability to exercise autonomy” (pg. 23).
In order to accomplish that, consideration of the “presence or absence of meaningful opportunities to build the skills required to exercise autonomy, including the existence of appropriate material and social conditions” (pg. 23, Meyers 1989). Therefore there are necessary factors that must be incorporated into the information given to the patient. One cannot assume to merely hand a newly diagnosed patient a PIP expecting them to understand what to focus on and how.
Patient autonomy, although present in health care policy, is not a key factor or requirement for private sector or public sector services in Canada or the United States. Women, as health care practitioners, as business owners and as patients have been advocating patient autonomy and have had a heavy influence over incorporating it into health care policy.
Now a few mammoth questions remain:
- Is the present amount of patient autonomy in health care policy enough, how can we increase it?
- How can women as health care practitioners, business owners and patients push for more education in health care literacy?
- Is it possible to amalgamate the two (education and health care policy) to revolutionize health care?
The over arching conclusion however is this: there is a need to provide information in a comprehensive, teaching manner that both educates and empowers patients to use their knowledge and make informed decisions. In other words, we must increase health care literacy.
Stick around for Part 3: Education
Sources without a Hyper-Link:
- Caplan, Arthur; Enhancing Patient Autonomy Through Peer Review to Replace the FDA’s Rigourous Approval Process, 2012, PDF
- Donta & Matthews, 10 Change Drivers for Health Care Policy, Retrieved from: http://www.csg.org/knowledgecenter/docs/LL05SpHealth.pdf
- Gedge, Elizabeth: Readings in Health Care Ethics, 2nd Edition, 2012
- Trends and Reports, CMS. GOV: https://www.cms.gov/research-statistics-data-and-systems/statistics-trends-and-reports/nationalhealthexpenddata/downloads/highlights.pdf
- Hospital Readmissions, http://hin.com/blog/2013/10/04/infographic-the-18b-impact-of-medicare-hospital-readmissions/
- Policy Changes To Improve The Value we Need from Health Care, 2007 http://www.ncbi.nlm.nih.gov/books/NBK52830/
- Renee Bracey Sherman, Black Women’s Health Care in Crisis, http://www.ebony.com/news-views/black-womens-heath-care-in-crisis-405#axzz44gwCrQ4k