Consumer-based Health Care Strategy: A Partnership with Consumer to Expand Clinical Research and Expedite Medical Discoveries
15. December 2008 by Healer6.
I attended an Institute of Medicine (IOM) workshop on sharing clinical data for research as a public good earlier this year. The lack of consumers’ trust to disclose their health information for research was hyped as the main barrier to clinical data being used for research to advance health care. The few solutions put forth ranged from amending and altering dated
US health care laws to allow use of clinical data for multiple research projects and focusing efforts towards gaining consumer trust by enhancing security and privacy measures to protect against data misuse.
Even though I was in agreement with the general concepts, I’m skeptical that we may be offering yet another piecemeal tactical solution in response to a serious strategic problem.
Although creating trust and protecting health information data is important, the workshop failed to address the root cause of consumer anxiety and mistrust, which is fear of discrimination based on their health information by employers and/or health insurance companies.
Also, the need for a unique national patient identification number which is critical for data integration (ensures data validity and reliability) and a comprehensive national clinical research program was not addressed.
In devising a solution, it is vital that we take a consumer-centric (yes I am commoditizing medicine and health care) approach to this problem (the use of health care data in research) and motivate a solution around his/her needs not clinicians and researchers. The solution must address these broad areas; removing disincentives which erode consumer confidence in the system, creating incentives to induce consumers to willingly share their health data for clinical research and educating consumers about how clinical research directly benefits them. National level clinical research significantly impacts medical advances resulting in improved health care, possibly reduced cost and can benefit the economy in terms of creating 21st century jobs.The fear of misuse of health care data and discrimination by employers and insurance companies are the principal disincentives for consumers to share their data. Discrimination based on health care data is no different from discriminations based on gender, race, physical handicap or physical appearance (beauty, obesity, height) all of which are well known, none of which can be hidden or kept private and all of which are basis for discrimination. However, laws have been passed to mitigate many of the aforementioned discriminations although not eliminating them categorically. Similarly, comprehensive and effective laws must be put in place to ban and penalize any discrimination based on family health history, health status or genetics. Although many may argue against such a law and question its free market wisdom, this is what it will take to get consumers to share their health data for research to advance medicine.Incentives to induce the sharing of health data can range from free to subsidized health care. Although incentives are not available at this time some consumers are currently sharing their health data hoping to advance intervention or treatment for their health problems, while others share their data for altruistic reasons. There are examples to demonstrate that given sufficient incentives some consumers are willing to share their health data to advance health care disregarding their privacy concerns and invalidating the repressive universal privacy laws that currently hamper access to health data and clinical research.Consumer-based patient portals (such as www.patientslikeme.org: biggest database of ALS patients and www.revolutionhealth.com), TV shows like “True Life” (about individuals with Tourette syndrome) and NBC’s “Biggest Loser” show also support the view that individuals go public with their personal health problems. Recent announcements of establishing Personalized Health Record (PHA) repositories by software giants Microsoft and search engine behemoth Google will further promote this trend of openness. A recent study by the RAND Corporation concluded that creating unique patient ID’s for every
US resident would facilitate a reduction in medical errors, expedite adoption and use of EMRs (http://www.rand.org/pubs/monographs/MG753/ and http://www.rand.org/commentary/2008/10/30/TH.html) and its consumer centric version, PHR.The other significant benefit that has NOT been articulated to consumers is the economic benefit the nation as a whole will receive if consumers share their data for clinical research to advance health care. Currently, 15% (??) of the jobs in the
US are health care based and it is anticipated that by 2020 (???) 30-35% of the jobs will be in health care. Furthermore, significant expansion of the clinical research industry is needed to maintain our lead in health care. The US advantage in the health care field can easily be lost to India and China as these two Asian giants become more technologically advanced and leap frog the technology (as is happening with wireless technology replacing the legacy land-line telecommunication) to meet the health care needs of their population while expanding their expertise in the health care domain to meet foreign demand for medical tourism.Consumer-centric health information technology is empowering the well informed consumer to benefit a comprehensive national clinical research agenda which can ultimately benefit the consumer themselves, the medical community and the nation’s economy. A national research agenda can not become a reality unless the current outdates laws are reformed and new ones are established with a grandeur vision of balancing public good vs. individual rights.
