A recent CNN.com article (http://www.cnn.com/2010/HEALTH/01/14/medical.records) entitled "Patients demand: 'Give us our damned data'" highlights the barriers that many patients must overcome in order to get access to their own medical records.
The Health Information Privacy and Portability Act (HIPAA) gives patients the right to their own health information, and dictates that doctors and hospitals must provide patients with this information upon request, but in reality it can be extremely difficult for patients to obtain a copy of their health records.
Patient requests that are met with administrative runaround, extended delays, and excessive expense marginalize patients as they attempt to take responsibility for their own welfare, and moreover can be responsible for compromising patient safety, quality of care, and clinical decision making, while simultaneously leading to excessive and unnecessary treatments.
This is a reality that would be considered incomprehensible in any other industry.
Part of the problem is that the majority of clinical records are paper based. The Health Information Technology for Economic and Clinical Health (HITECH) Act, part of the ARRA, aims to change this by providing doctors and hospitals financial incentives for adopting electronic health records (EHRs). One of the criteria involved is for health care providers to engage patients and their families by granting them access to their health records.
Simultaneously, consumer facing health IT solutions such as Personal health Records (PHRs) have been rapidly developing in an effort to help patients gather, store, and share their medical information. Given that a minority of doctors have EHRs, most PHRs to date have required patients to enter their data manually, or relied on alternative sources of data such as insurance claims, labs, pharmacies, etc.
However, the convergence of the increasing digitalization of clinical information with accelerated development and adoption of PHRs would potentially lead to the widespread availability of robust, personally controlled health records. Patients would have access to and control over their health information. They would be empowered to be more active participants in their health and care. And they would be able to share their information with the family members or doctors of their choosing.
Employers can play a big role in terms of empowering their employees with access to their health data. As payers of health care, employers are beginning to use their leverage to convince otherwise recalcitrant data sources to hand over health data to their employees. For example, large self-insured employers are demanding that their claims administrators export employee claims data into PHRs. Faced with compliance or losing business, insurers are more often than not compelled to acquiesce. Likely not the position they would take if faced with a similar demand from an individual. Similar logic might apply to hospitals and other sources of health data.
This is a win-win for employees and employers alike. Employees gain access to their health information, save time and headaches, avoid dangerous clinical complications, and experience improved quality of care. Employers benefit from having healthier, more productive employees, as well as lower health care costs.
Employers and their employees pay for the majority of health care in the United States, and are in turn directly affected by the quality and cost of the health care system. Though for a long time reticent to do so, employers are finally waking up to the fact that they need to be proactive about finding solutions to improve the efficiency of the system. Empowering employees is a key strategy through which to do so â€“ and getting employees access to â€˜their damn dataâ€™ is a big first step.