Over the next few months, ideas will be crowd-sourced to gather standards for a code of ethics, a set of guiding principles
for those committed to ensuring every patient is put first. The goals of the code of ethics are:
» To establish a set of overarching guiding principles around the development and support of patient education that can be
adopted across the healthcare spectrum to ensure every patient is put first.
» To put in place the appropriate processes, policies, and training for those developing patient education to alleviate bias.
» To put a spotlight on the issues and make patients and caregivers aware of some of these gaps and the need to ensure they
are searching for information from credible resources.
» To prominently recognize those organizations that have committed to the code of ethics making this information available
Healthcare professionals, who have had years of rigorous training, have the appropriate safeguards in place to ensure they
have access to unbiased education, but who is protecting our patients that might be navigating the healthcare system for the
first time? When patients access education, they need to understand the origin of the information and how it's managed, the
funding source, the medical accuracy review process, how current the information is, and privacy policies if any information
is being collected. All of that must be done—on top of managing their condition. The adoption of an industry code of ethics
would allow patients to focus on what's most important—managing their condition and getting well. A few guiding principles
Draft code of ethics
Unbiased. Education must be scientifically rigorous and credible with a standard or tool for defining and assessing bias in education.
» Evidence-based. Decisions on patient education content must be made in the best interest of patients and based on validated evidence and
accepted standards of care.
» Transparency. Supporter and sponsor involvement must be disclosed in the development and support of education. If education is developed
in collaboration with another organization, education should be disclosed as "developed in collaboration" rather than solely
depicting a logo, which can also be linked to "independent" education. Leveraging the medical expertise of pharmaceutical
companies can be extremely beneficial, as pharmaceuticals companies are well positioned to develop exemplary resources, but
this should be disclosed to those receiving the education. Transparency around involvement is important.
» Conflict of interest. Any conflict of interest must be disclosed to patients. It is understandable that conflicts of interest may surface from
time to time and organizations should have conflict of interest resolution processes in place to address them.
» Content development. Procedures should be put in place to ensure that educational content developed is reviewed and endorsed from a scientific
standpoint by medical experts.
» Need based. Education should be based on measured and documented needs that address specific educational gaps—not perceived needs.
» Peer reviewed. Education should undergo rigorous peer review prior to dissemination to ensure information is objective.
» Outcomes-based. Interventions should incorporate a plan to measure outcomes with standard approaches for assessing retention or behavior
We ask Pharm Exec readers: What else would you suggest including in the code of ethics? What other ideas do you have? What barriers to adoption
do you foresee?
Sarah Krug is CEO of CANCER101 and President of The Society for Participatory Medicine, and formerly the Director of Global Education at
Pfizer Pharmaceuticals. She can be reached at