The National Health Council and The Genetic Alliance are asserting the need for further patient engagement and incorporation of patient perspectives in drug development and the pharmaceutical industry.
In a recent webinar the Chief Executive Officer of the National Health Council Marc Boutin, JD, President and Chief Executive Officer of the Genetic Alliance, Sharon Terry, MA, and Vice President of Avalere Health, Brenda Huneycutt spoke about the need for this progress as well as barriers to it and possible solutions.
One such barrier that was identified, as stated by the NCH and Genetic Alliance, was the culture prevalent among drug development organizations etc. often hold the view that;
“-Methods/approaches for engaging patients and collecting information are not scientifically robust or methodologically rigorous
– Perception that patient perspectives are anecdotal, emotional, and subjective, which may detract from clinical data”
It was posed that organizational culture holds
“-Skepticism regarding benefits of patient engagement
– Internal resistance to changes
-Uncertainties in the environment”
The proposed solution to this intangible but very real barrier to furthering the inclusion of patient engagement in drug development was essentially to promote a culture shift. To approach such a potentially difficult and daunting class they broke the initiation of a culture shift into short lists of primary and supportive actions as seen below;
Primary Actions
-Generate buy-in
-Create accountability for collecting/integrating patient perspectives
-Create Public-private partnership
Supportive Actions
-Develop/Implement tools and metrics
-Train/educate researchers
-Help patient groups solicit.fund patient-centered studies
Arguably, the first step to initiating this type of cultural shift within institutions has already started simply by the NCH and Genetic Alliance as well as other organizations perpetuating the conversation and pushing the topic into the spotlight. Their work is sure to reach many and act a catalyst for wide-spread change in the pharmaceutical world.
The quotes featured here and more information can be found at nationalhealthcouncil.org
Image sourced from express.com
