Do interventions have a measurable effect on patient outcomes? Increasingly, in an age of "evidence-based medicine", physicians and health care providers are being challenged to show improved clinical outcomes. caBIG® may help one research team do just that, in a new collaborative stroke research project that will encompass multiple centers to gather a sufficiently large sample size.
Dr. Max Wintermark, Assistant Professor in Residence in the Neuroradiology Section of the University of California San Francisco, is a neuroradiologist, or a "radiologist of the brain." He studies CT scans, CAT scans, and MRI imagines, splitting his time between clinical duties and his major research interest-stroke and stroke imaging. Currently, he is designing a massive research project to show that better imaging techniques can improve outcomes for stroke patients.
"Currently, we have a very limited window of time to treat a patient who has suffered a stroke," explained Dr. Wintermark. "You can administer treatment only if the patient is admitted, evaluated, and diagnosed within three hours of the stroke, which is very rare."
The current treatment for stroke consists of drugs or surgery to dissolve or remove the clot which caused the stroke. If treatment is administered after three hours have elapsed, the risk of causing a major hemorrhage in the brain is significantly increased.
Better Technology, Greater Personalization of TreatmentA new, advanced imaging technique called, "perfusion imaging," allows clinicians to view the brain in greater detail, and to see functional images of the brain. Using this technique, physicians can very precisely monitor the location of brain tissue that has died as a result of the stroke, and which tissue is "ischemic"-meaning that it is being affected by the clot, but may still respond to treatment. If the clot is removed in time, ischemic tissue can be saved, minimizing the long-term effects the patient will experience from the stroke.
"This new information may allow us to tailor treatment to a specific patient's risk," noted Dr. Wintermark. "Using perfusion imaging, it might be possible to expand the time window to treat to approximately nine hours-meaning that we can treat between 40 percent and 50 percent of stroke patients with greater success."
There are currently different methods in use to measure the penumbra (the location of "at risk" tissue that will inform treatment decisions). These methods have been shown to work in small studies, but they have never been validated in a large group of patients.
Dr. Wintermark explained, "If we are to demonstrate improved outcomes as a result of this technique, we will need a large sample size that cannot be achieved by a single institution. We can only achieve this with collaboration, which is enabled by caBIG®."
Addressing Research Challenges through CollaborationDr. Wintermark is part of the Stroke Imaging Repository Consortium (STIR), a group that is attempting to collect a large sample of images so that the various methods can be tested and validated. This work will allow researchers to find out which method is best, or if they are equivalent.
To succeed, the group will need many centers to collect the datasets, which will require an infrastructure and standards to allow data to be shared; a repository to store and share images; a tool to standardize measurements and annotations made to the images; and a tool to allow researchers the ability to view remote images from a local DICOM viewer without importing and exporting images-a time consuming and cumbersome process.
Dr. Wintermark noted that this project is still in the planning stages, and that many details must be worked out. However, he has found that many of the usual obstacles to collaborative research, such as logistics, data sharing, and resulting IP, can be managed by careful planning at the outset. Centers that are expected to collaborate on this project include: University of California, San Francisco; University of California, Los Angeles; Georgetown University; Washington University in St. Louis, Intramural Research Program of the National Institute of Neurological Disorders and Stroke; The University of Edinburgh; and The University of Nottingham.
"This area is one space where it serves the research community to collaborate, since if we cannot come to consensus in the imaging community, we will not be able to demonstrate the usefulness of perfusion imagery-insurers will not reimburse for the service, it will not be adopted by the community, and patients will suffer as a result. We are confident that caBIG® will help us get the answer we have been looking for."
New Family Health History Tool is a gateway to Personalized HealthcareNCI and caBIG® partner with HHS to facilitate collection and sharing of family health information
We've all heard people say, "She has her mother's eyes," or "He has his father's nose." But shared family characteristics are more than just skin deep-in addition to your father's nose, you may also have inherited his high blood pressure, and your Aunt Marge may have passed along her heightened risk of breast cancer. The health histories of your immediate family are an important source of information about your own risk for, and predisposition to, many health conditions. This analysis is called "family health history," and is an important tool in the prediction, diagnosis and management of disease. The U.S. Department of Health and Human Services (HHS) has just launched a free, web-based Family Health History Tool to help consumers capture, organize, and share this vital health information.
"Family history is essential in many cases of applying personalized medicine tools in risk assessment and prevention," explained Greg Downing, D.O., Ph.D., Program Director, Personalized Health Care, Immediate Office of the Secretary Department of Health and Human Services. He continued, "The added benefit is that this resource is free and widely available-almost everyone can learn about their family history simply by asking."
The NCI's roleThe NCI is playing an important role to support, distribute, extend and disseminate the FHH tool through the caBIG® infrastructure. The NCI help desk is available as a resource to both patients and physicians who are interested in using the tool, and the tool is available through the NCI open access web infrastructure that is used to support the rest of the caBIG® and BIG (Biomedical Informatics Grid) framework, to be downloaded and customized as needed.
"I think this tool is an important step in extending consumer e-health capabilities as well as empowering physicians to act on individual risk profiles," said Ken Buetow, Ph.D., Associate Director for Bioinformatics and Information Technology, National Cancer Institute. "We're excited to provide long-term presence and widespread availability of the FHH tool, leveraging the caBIG® infrastructure and integrating it into BIG," he added.
Dr. Buetow further noted that caBIG® has existing resources-such as image repositories and electronic medical records-that can be combined to create a 360 degree picture of a patient's health.
Moving forward, the NCI expects the FHH tool will be used throughout the NCI national network of academic centers and community cancer centers.
Harnessing the Power of Your Family Health HistoryMost disease can be attributed to interactions between multiple genes and environmental factors. Knowledge of these genes and their place in one's family history can be an integral part of a physician's ability to properly assess the health outcomes of the individual-and doesn't always require expensive genetic tests. Many people are unaware of their relatives' health histories, and family health history is underutilized by health care professionals. The FHH tool provides a much needed resource for patients and clinicians alike to consider family health history as a key part in the medical, diagnostic and treatment protocol.
"The tool really gets to the science behind risk assessment and considers genetics, lifestyle, environment, culture and community collaboratively to get a sense of the health of the individual," said James O'Leary, Chief Operating Officer, Genetic Alliance.
What Patients Should KnowThe new Family Health History (FHH) Tool is free and available online at https://familyhistory.hhs.gov. It enables individuals to organize and track their family health history and it is compatible with common health portals and personal health records, such as Google health.
To use the tool, patients access an online portal to enter their medical history, as well as the histories of family members, using common drop-down menus and tables. The portal design and features are similar to other common online profiles, such as online banking and social networking sites. Patients may download and complete a record, update an existing record, or share information with other family members or physicians.
The tool helps physicians develop plans for individualized disease prevention by capturing many genetic and gene-environment factors, as well as providing aid in predicting risk for various health conditions. For example, a history of heart disease may place a patient in a higher risk category, even if he does not have any symptoms himself. This knowledge enables a physician to consider a more aggressive screening schedule; recommend preventative measures such as diet or exercise; or even prescribe medication designed to reduce the risk of future heart disease.
What can FHH do for Providers?Healthcare organizations can also download and customize the tool so that it meets the specific needs of its patients and practitioners. The tool can be integrated with an existing electronic health record system and can be offered under an organizations' own brand-while preserving a set of standards that allow the information to be shared across multiple systems. The tool helps clinicians deliver more personalized care now by linking existing information to a medical record in an organized and meaningful way
"Family history has always been an important part of good health care, but it has been underused," said Rear Admiral Steven K. Galson, M.D., M.P.H., and Acting Surgeon General. "Today, with our growing knowledge of genetics, family history is becoming even more important. The new tool will help consumers and clinicians alike. It will also serve as a platform for developing new risk assessment software that will help in screening and prevention of cancer, heart disease, diabetes, and other conditions."
The tool was collaboratively developed by the Department of Health and Human Services (DHHS) along with the Surgeon General and the American Health Information Community. Key partners include the Department of Veteran's Affairs, the Indian Health Service, Intermountain Healthcare, and Newton Wellesley Hospital, a Member of the Partners Healthcare System.
How to adopt the FHH Tool"My Family Health Portrait" serves as the initial portal to the tool. It is completely secure and the platform is available for other groups to offer in their own portal forms, to encourage broader adoption of the tool. Organizations can download the code and customize it to fit their brand while preserving standardization, interoperability, and clinical utility.
By visiting https://familyhistory.hhs.gov users can download the source code and use it as is or integrate it with their own systems and branding to offer to their members. It is the goal of caBIG® to expand the access and use of the tool by making the basic platform openly available for groups such as clinics and health plans so that they can encourage consumers to complete their histories, which can ultimately become part of a patient's electronic health record.
Additional ResourcesPatients can access the portal at https://familyhistory.hhs.gov
Questions can be sent to FHH@hhs.gov
A demonstration of the FHH tool be viewed online at http://videocast.nih.gov/PastEvents.asp?c=0&s=41
