Medical education for healthcare professionals has a stringent governance structure in place to ensure that every healthcare
provider has access to unbiased education. There are regulations around the commercial support of medical education, as well
as an accreditation process for both educational activities and the organizations that develop the education.
Transparency is imperative; if an educational intervention is deemed promotional in nature, it must be disclosed as such.
This ensures that healthcare professionals have access to a spectrum of options and are essentially making informed medical
decisions based upon all the facts and sound judgment. The aim of structural governance in medical education is to protect
healthcare professionals from information that may steer them down the wrong path for a particular patient, without a full
understanding of all the options.
In the world of patient education, processes, policies, and oversight differ vastly. There is no overarching governance structure.
There isn't an accreditation process for educational interventions or patient advocacy organizations that develop the education.
There is no mandate, for instance, that patient advocacy organizations put in place a content validation process or a conflict
of interest policy to ensure that patient education truly puts every patient first. There aren't formal instruments or regulatory
bodies to assess bias (or to even define it) in patient education, or requirements that patient education undergo peer review
prior to dissemination.
The "participatory medicine" movement is underway where networked patients are shifting from being mere passengers to responsible
drivers of their health, and clinicians are encouraging them as full partners. To encourage this partnership, the tools and
resources we use to educate, empower, and engage patients in their care are essential. Each patient deserves access to all
the facts through unbiased interventions to allow for informed medical decisions that will ultimately affect their outcome.
Patients are key decision makers and should be given the equivalent of what healthcare professionals receive, but in laymen's
terms. Patients navigating chronic illnesses may not have the skillset to understand how to detect bias or distinguish between
promotional and independent education, where the distinction can be subtle.
In addition, trusted entities such as patient advocacy organizations don't always have the training or policies necessary
to ensure content validation processes and to address conflicts of interest. There is often a misconception that all ".orgs"
are trusted sources of information and this is simply not the case. A .org is not always indicative of a non-profit, and a
non-profit is not always indicative of unbiased education. Patient advocacy organizations often serve as lifelines for patients
and caregivers, helping them navigate complex processes, understand options, and obtain a support system.
However, standards across patient advocacy organizations vary, and this variation can affect patients who may not have the
trained eye of a media critic, or understand the need to ascertain the credibility of educational resources. With the advent
and flexibility of the Internet, where a majority of patients access health information, it's more important than ever for
us to arm patients with credible information. Finding valuable and reliable information on the Internet is like mining for
gold; patients must sift the nuggets from the garbage.
How can we apply what we've learned about ethics in research to ethics in patient education? For decades, research ethics
have benefited from the development of various codes and guidelines, but no similar code exists to guide in the ethical involvement
in education. The World Medical Association Declaration of Helsinki states, "Even the best current interventions must be evaluated
continually (through research) for their safety, effectiveness, efficiency, accessibility, and quality." Principles of continuous
evaluation should equally apply to educational interventions.
What can we learn from the compliance-driven, continuing medical education/continuing education industry, which was a reactive
model enforced due to legacy practices and resulting regulation? How can we implement a more proactive self-regulation model
with more flexibility to allow for strategic partnerships between industry and patient advocacy organizations? How can patients
and patient advocacy organizations better leverage the medical expertise and knowledge that pharmaceutical companies have
access to in an appropriate and transparent manner? How can we strategically partner across healthcare sectors to improve