Kaiser Permanente is expanding a database of DNA and other medical information donated by patients to use in research it hopes will lead to groundbreaking cures and treatments for some of the most common chronic diseases.
The health system, which started collecting data from patients in California in 2008, said it now will track patient data from members across the country, including those it treats in Maryland. It believes the national Kaiser Research Bank could become one of the country's largest and most diverse repositories of health data.
"There is such power in numbers," said Cabell Jonas, regional operational leader of the Kaiser Research Bank. "The more data we have coming from different communities, the more representative the bank will be and allow us to look at all kinds of diseases. We have such a diversity of members in Kaiser that we hope the bank will reflect the population."
Kaiser aims to collect data from 500,000 members and is almost halfway there, with 220,000 patients now participating. Kaiser has 10 million members in eight states and the District of Columbia. The data will be available to Kaiser researchers as well as to scientists who work for other institutions. So far, about 175 people have signed up to participate from Kaiser's Mid-Atlantic region, which includes 660,000 people in Maryland, Virginia and Washington.
The massive amount of information, which will be kept anonymous to protect patient privacy, will give researchers a broader look at how diseases affect people of different backgrounds, Jonas said. They could look at how DNA affects the way a patient responds to a certain medication or how environmental factors influence cancer and other diseases.
"The KP Research Bank also has the potential to bring important knowledge to communities that have some of the poorest health outcomes in terms of obesity, diabetes, and hypertension," according to a news release issued by Kaiser.
The health care provider is encouraging members of all ages, genders, ethnicities, and backgrounds to consider participating.
"Kaiser Permanente has a long history of conducting innovative, translational research that benefits the health of our members and the communities we serve," said Karen Emmons, vice president of Kaiser Permanente Research, in a statement. "The KP Research Bank, which should reflect our richly diverse membership, could lead to breakthroughs in ways to prevent or treat diseases and may in the future provide patients with health care based on their individual DNA, environmental, and behavioral information."
Researchers using information from Kaiser's earlier patient data gathering were able to identify certain genetic factors that influenced whether someone developed hernias, for example, Jonas said.
Those who agree to share their medical data sign consent forms granting access to their records. They also provide blood samples and complete a brief health survey. The survey will help researchers determine behavioral and environmental factors that affect health.
The data will be protected by layers of security, including extra firewalls, and will be stored separately from other records. Any identifying information, such as names and addresses, will be removed from the files, Jonas said.
Kaiser's effort is part of a growing trend among scientists to use large amounts of patient data, now more readily accessible with the growing use of electronic medical records, to boost research efforts.
The National Institutes of Health is in the midst of a research project that will enroll more than 1 million people of varying age, race, income and health status. Researchers will look at how genetics and environment affect disease, much as Kaiser is doing. The NIH study plans to enroll 79,000 people by the end of the year and is the largest ever undertaken by the federal government.
Other biobanks have been created by governments in the United Kingdom, Japan and Iceland, Kaiser said. The American Cancer Society and the U.S. Department of Veterans Affairs also created such banks.
"One of the ways the Kaiser Permanente Research Bank is unique from other efforts is that in addition to DNA samples, we ask our participants about behavioral and environmental factors," said Sarah Rowell, associate director of the KP Research Bank.
Jonas said the DNA and other new medical information collected will enable researchers to connect that information with data already in the patient's electronic medical record.
This "could allow us to make discoveries that just aren't possible with other research resources," Jonas said.
She said it could be years before conclusions can be drawn from the results of any research.
"Research is one of the most important ways we can find new treatment and new cures for disease," Jonas said. "[The bank] is just another way that we can gather health information in a way that creates health solutions for our members."