Helping Clients Build Personal Advocacy Skills: Step Three
by Michal Klau-Stevens
Maximizing Research for Healthcare Advocacy
There is so much information available on the internet about pregnancy, birth, and breastfeeding, but there’s one important type of information that will help your clients with their efforts to advocate for themselves with their care providers: peer-reviewed research. In this post, which is part of a series on healthcare advocacy skills, we take a look at the different types of information available to our clients, which types are most effective in helping them communicate with their doctors, midwives, and other care providers, and how we can help our clients make use of scientific research to make evidence-based healthcare decisions.
Scroll through any social media site and you’re likely to find posts about the latest discovery in healthcare. New sites report on studies that have been released, celebrities and advocates write blog posts, magazine reporters write articles, and people post about their personal experiences with one remedy or another. Maternity care advice, in particular, is everywhere. To many people, the information from a well-known news site, a magazine, and a blog post may all carry the same weight, but nothing could be further from the truth. Each step away from the original source of the data increases the addition of bias, conjecture, misunderstanding, and embellishment. And what is the original source of the data? Scientific research, and the gold standard for scientific research is the peer-reviewed study.
Peer-reviewed research has been critiqued by other professionals in the field, and been deemed worthy to publish in journals or other professional publications. It represents the highest standards of scientific inquiry. True, it has shortcomings, especially relating to maternity because of the ethics of doing research on pregnant women, but peer-reviewed research is some of the most useful information that our clients can use while advocating for themselves with medical professionals. It is the source of the evidence that creates the foundation for evidence-based practice, and is therefore hard for medical professionals to deny.
Unfortunately, peer-reviewed research rarely goes directly to the average maternity care consumer. It gets filtered through other sources before it gets to them, and those sources can be framed in a hierarchy of most reliable to least.
At the top of the hierarchy are government websites and publications, which are directed either at professionals or at consumers and detail the most up-to-date research from government agencies.
Next are sources such as brochures, websites, or pamphlets from medical, midwifery, nursing, and childbirth education professional organizations, such as the American Congress of Obstetricians and Gynecologists, The American College of Nurse Midwives, and the Association of Women’s Health, Obstetric, and Neonatal Nurses, and ICEA. This information tends to closely adhere to the findings in the research, but it still may be presented through the lens of the mission of the organization.
Below that are advocacy organizations that focus on particular causes, such as The March of Dimes and Childbirth Connection. Advocacy organizations may raise money for research, educate and raise awareness about a topic, and/or lobby for policy changes. These two organizations have excellent reputations for adhering to the evidence, but other organizations may not be as exacting and should be vetted for accuracy.
Below that are experts, who either work in the field or synthesize the research to make it understandable for others. They may work for a company or organization with a particular agenda, or work independently, with little oversight or accountability and only their reputation and income at stake. The quality of their work can range from very accurate to wildly inaccurate. Experts might author books, appear on television shows, offer educational programs, or promote their material in other ways, and the quality of the information they teach is dependent upon their adherence, or lack of it, to the research.
Further down the list are news sites, pregnancy sites, magazines, and television shows. Reporters, who may or may not be experts in the field on which they are reporting, gather the content on these sites. They rely on experts and others who have various kinds of experiences relating to the topic being covered. With each person the information passes through, the chance for bias to enter increases. Also, these are collaborative fields, in which editors filter and refine the information, but may do so in ways that further alter what gets through to the public. More importantly, these sources are usually commercial endeavors that focus on promoting information that will be of interest to their specific audiences and will sell advertising for revenue.
At the bottom of the list are personal blogs. These are like the wild west of the internet, where anything can be stated as fact or truth, but with almost no accountability or fact-checking.
With each step down in the hierarchy, more vigilance is required from the consumer to ensure the accuracy and lack of bias in the information. Healthcare professionals are unlikely to practice “internet medicine.” They need to work from reliable sources of information that align with standard of practice. Those sources are most likely to be at the top of the hierarchy of information. Information on the higher levels is most likely to be useful in advocating with medical professionals because it comes from the most accurate and most respected sources in their field. Using scientific data also puts the patient on a more even playing field with their caregiver, making the relationship less authoritarian and more of a partnership.
How can we help our clients use scientific research to their advantage? There are a few steps we can take:
• Help them access the peer-reviewed research through sites like PUBMED, Cochrane, university library databases, and through colleagues who have access to those sources.
• Help them read through the studies, which can be daunting for someone without experience in reading scientific research.
• Find the sources at the top levels that are in a format they can understand and are most likely to be acceptable to their caregivers.
• Find the reliable sources at the mid-levels of the hierarchy by doing the research about the organizations and the experts and vetting them yourself.
• Teach them how to be more discriminating about the information they are taking in, through discussions about media literacy.
As birth workers, we have a much better understanding of the range of information that is available to our clients, have experience reading research from reliable sources, have opportunities to teach our clients how to make sense of the data they encounter, and can be a resource for them for accessing high-quality information. We can be instrumental in helping our clients maximize scientific research to advocate for their healthcare needs.
Stay tuned for Step 4 next month!