Betty Irene Moore School of Nursing at UC Davis Doctoral Candidate Katherine Kim and a team of researchers recommend the development of guidelines that protect patient preferences and privacy while allowing investigators to share data through electronic health records and other databases. The research, “Development of a Privacy and Security Policy Framework for a Multi-state Comparative Effectiveness Research Network,” is published today in Medical Care, a national public health journal.
Kim and three co-authors discovered that researchers, who analyze records to translate trends into treatment options, are limited by traditional approaches to sharing data, such as the distribution of data across state lines and institutions. The study compares state laws and regulations as well as institution-specific policies intended to protect privacy and security of health information.
“We found that most state laws focus on consent for gathering the information,” Kim said. “There is much less guidance on sharing data for research purposes.”
As part of the research, Kim analyzed guidelines and laws in California, Illinois, Massachusetts and the U.S. Department of Veterans Affairs. She applied her analysis to three comparative-effectiveness studies that varied on the type of patient data shared and the flow of data:
- Safety of new oral hematologic medications
- Medication therapy management for patients with diabetes and hypertension
- Informational interventions for providers in the treatment of acute respiratory infections
A seven-member panel of policy and technical experts reviewed the analysis and provided input into the framework. Kim recommended that as research networks develop, governing policies should allow for flexibility and balance the need for better data access with the responsibilities of protecting that data. The study was funded by the Agency for Healthcare Research and Quality (AHRQ) and the AcademyHealth Electronic Data Management Forum. This article is the first of three.
“The next step is to look at the requirements and design of a network that incorporates consumer and patient perspectives,” Kim said. “It is important to pay attention to what patients want and need from research. Even though they may not be using this system, the data is theirs.”
The study is part of Kim’s dissertation research, which focuses on the application of technology to improve the delivery of health care. Kim balances her studies with her full-time position as a professor-in-residence for the Health Equity Institute at San Francisco State University. She leads the San Francisco State University research team to guide the development of the Scalable National Network for Effectiveness Research (SCANNER) system, a collaborative effort between UC San Diego, Harvard, RAND, San Francisco State University and Vanderbilt to update patient data in real-time from clinical databases, making research and analysis easier. Kim earned a bachelor’s degree in Biology from Harvard and Master of Public Health and Master of Business Administration degrees from UC Berkeley.
Medical Care is the official publication of the Medical Care Section of the American Public Health Association. Kim’s article was published in the Electronic Data Method Forum’s special supplement, which features 13 commissioned and invited papers to advance opportunities of multisite research using electronic data to improve patient outcomes. Click here to read the full article.
The Betty Irene Moore School of Nursing at UC Davis was established in March 2009 through a $100 million commitment from the Gordon and Betty Moore Foundation, the nation's largest grant for nursing education. The vision of the Betty Irene Moore School of Nursing is to transform health care through nursing education and research. Through nursing leadership, the school discovers knowledge to advance health, improve quality of care and health outcomes, and inform health policy. The school's first programs, a doctoral and a master's degree program, opened in fall 2010. Additional students and programs will be phased in over the next decade. For more information, visit nursing.ucdavis.edu.