Genetic Alliance staff engaged in a conversation recently about transformation of the healthcare system.  Although we intended to point without us, and find challenges and opportunities for the new administration to ‘fix’, we discovered what many are discovering these days — change begins with me, with us.

The Genetic Alliance staff has a strong interest in health.  We are individuals familiar with the healthcare system: whether through our own personal experiences or those of our family members, our work in health systems, diverse stakeholder engagement, and our commitment to improving the lives of individuals, families, organizations, and communities affected by genetic conditions.  We also have a unique vantage point through our dedication to accelerating the translation of research discoveries to treatments and therapies.  We identify disruptive innovation as a tool for achieving great beneficial impact on systems — we are disruptive women and men.

We began our discussion with each member of the group providing a personal story of an experience with the healthcare system.  These stories included:

– A staff member has a family member who suffered a sudden change in health, and despite being more fortunate than others in his monetary situation and having comprehensive health insurance, the family still had over a million dollars of out-of-pocket expenses due to a surgical complication that occurred during a routine medical procedure.
– A staff member drew a comparison between health education in other countries (in his example, Mexico) and the United States, and he observed that health education is instilled in many aspects of other cultures, but it seems to be less so in the US.
– A staff member shared her experiences with the military medical system as a daughter of a parent who served in the military, and discussed the high quality of care she was fortunate enough to receive.  She asked if there is a significant difference between the quality of care in the military health system versus the civilian health system, and if so, why.
– A staff member discussed her surprise upon obtaining health insurance in the United States and the drastic difference in costs between obtaining necessary healthcare “in network” versus “out of network.”
– Our discussion of these and similar personal stories led us to conclude that we would each have a different perspective on the health system, and that we come to this discussion from different backgrounds and experiences of equal importance. This was a profound conclusion, for while we could not come to consensus on the biggest problem in the health system, we began to analyze what we, as a collective of diverse individuals with broad experiences with the healthcare system, bring to disruptive innovation as a tool for change in health systems.

We embarked on brainstorming surrounding how can and will “healthcare reform” REALLY happen.  We wrestled with the question of the health system, which is composed of so many subsystems, and with the difficulty of identifying the system we were actually discussing: the medical system, the test or drug development system, the civilian system versus military system, or all of the above?  Will we come at this expansive “health system” from all angles and all perspectives?

Our conversation organically evolved into a discussion of what must be achieved to bring about change. From our collective brainstorming, we concluded that we felt personal empowerment as paths were cleared and new opportunities emerged for the amplification of what were previously small voices.  Clearly, as President Obama has said, change will come from from the “WE”.

WE must inspire and ignite change at the community and individual level.

Through our healthcare community discussion, we decided that change must begin with us — that we must seek out answers to our healthcare system on a very personal level.  Through engaging in this healthcare discussion, we developed a new collective awareness and motivation, and made a commitment to integrate  “health” into our lives, both personally and professionally.  As one example of how we will promote this behavior within our office, members of the Genetic Alliance staff volunteered to serve on an office “Health Committee,” which would have a number of goals, including:

– Monitor the food we maintain in the office, and seek out healthy options or alternatives;
– Create staff raffles, events, or friendly competitions to encourage healthy lifestyle choices;
– Brainstorm ways we can utilize the thousands of organizations within our network to spread these healthy behavior activities; and,
– Integrate this culture into our Annual Conference and other Genetic Alliance events through bringing participants together for organized morning yoga or walks, ensuring healthy options and alternatives in the food we provide, and designing an organizational trends session on promoting a healthy environment in the workplace.

Furthermore, Genetic Alliance will make use of the social network theory that we have worked on for a number of years in information and resource sharing and dissemination, and in connecting individuals and communities.  Through our robust network of the genetics/health community, we will provide forums for discussing healthy lifestyle and behavior choices, communicate best practices and strategies for success, and through novel partnerships and collaborations, we will fuel, inspire, and share the responsibility for improving the health of individuals and families.  We are committed to do the work, and we will be ready to engage with our community.

Re-thinking and developing an improved infrastructure to promote health, prevent disease, and identify and treat disease early is key to the foundation of a new system that is equally accessible to all Americans, both financially and geographically.  From a policy perspective we must acknowledge that health policy extends beyond healthcare policy and health insurance coverage, as health and the opportunity for a healthy life are influenced by policies in areas including education, community development, transportation, environment, as well as policies to help meet basic human needs such as housing and food.

Through improved, efficient public health programs and novel partnerships at the community level we can reach those most in need and work to educate, empower, and support healthy lifestyles and the health behavior changes necessary to make health a way of life in every community and family. Within the healthcare system, we need to develop an infrastructure that supports individuals’ proactive management and involvement in health and that allows individuals to ask questions and be reflective of information. We must create an environment that shares the responsibility of health between the healthcare system and the individual, that gives consumers control over their health information and encourages informed decision-making, and addresses the needs of individuals within the context of their families, work, belief systems, and their overall environment.

This week, I am losing the stair climbing competition (a star for each time we each climb the 4 long flights to our office)!  Next week we install an elliptical and a stationary bike in one of the offices.  Regular weekly one-on-one mentoring sessions will take place in motion!  Health transformation begins with US!

This entry was posted on Thursday, February 12th, 2009 at 3:22 am and is filed under Access, Consumer Health Care, Innovation. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.