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Center for Personalized Healthcare Winter 2013


Personalized Healthcare Summit to Return in May

Mark your calendars now for May 6-7, 2013 for the Third Annual Cleveland Clinic Personalized Healthcare Summit: Topics, Tools and Tomorrow. Building on the success of our previous events, our 2013 Summit will be a forum to explore the progression of personalized healthcare from concept to practice.

We are pleased to announce this year’s keynote speakers, Joe and Retta Beery. Joe Beery is Chief Information Officer for Life Technologies and has served the same role at Invitrogen since September 2008, but the Beery’s will focus their talk on their family’s life-altering experience with personalized healthcare. Their twins, born in 1996, were diagnosed with cerebral palsy at age 2. Retta, noting many inconsistencies between the typical CP presentation and those manifested by her twins, spent years researching and seeking alternate medical opinions. Finally, at age 5, daughter Alexis was found to have dopa-responsive dystonia, a condition which mimics CP but is highly responsive to treatment. Within 2 4 hours of getting the medication, Alexis went from hardly functioning to acting like a normal 5-1/2-year-old. Unfortunately, 6 years ago, Alexis was again disabled by a serious breathing disorder. By this time, Joe was working at Life Technologies, so the family opted for whole genome sequencing in an attempt to find out what was happening. When the researchers at Baylor sequenced the twins' genome, they found that the twins had a particular subtype of dopa-responsive dystonia that prior research has shown isn't due to just a dopamine deficiency, but also to a serotonin deficiency, another key neurotransmitter. Simple treatment with serotonin has allowed Alexis, now a freshman in high school to live a normal life and even excel at cross country running.

In addition to our formal program, this year’s Summit will also include Poster Session, networking opportunities, and discussions with many experts in the field. The Summit will be held at the InterContinental Hotel and Conference Center in Cleveland, Ohio and will include an evening reception.

For more information and to register, please visit our website at www.clevelandclinic.org/phcsummit or email cphinfo@ccf.org.


MyFamily Now in Pilot Phase

MyFamily now in pilot phase, is an integrated tool with the intent of incorporating Personalized healthcare into the standard practice of care.

Personalized healthcare demands technologies that will improve our ability to predict risk and prevent disease. As such, Cleveland Clinic’s Center for Personalized Healthcare is excited to be developing MyFamily, a smart, integrated tool that aims to enhance our ability to predict disease risk using family health history. In addition, MyFamily aligns with Cleveland Clinic’s value-based operations (VBO) by creating efficiencies in the collection and use of family history at the point-of-care and by driving appropriate utilization of resources.

MyFamily is the first clinical decision support application made available through the existing electronic medical health record system (EPIC). In its pilot phase, MyFamily is a custom-built software tool that selects applicable MyChart enrollees who have upcoming well-check appointments and asks them to participate in a “pre-visit” information gathering process. They will be asked about the health history of their parents, grandparents as well as their own children. The easy-to-use online collection system makes it possible for patients to save their work so they can return later should they need to find answers or gather additional family information. The inherent ability for the patient to work on their terms —in their homes and at their pace supports Cleveland Clinic’s “patients first” mission.

Once the patient tells the system that they are finished entering data, the data is sent to a pedigree drawing tool that builds a concise pedigree image that is then attached to the patient’s electronic medical record for future reference. Additionally, MyFamily uses a set of highly tuned, proprietary algorithms to stratify the patient’s risk for disease. At the time of clinical encounter, the clinician is presented with these findings and may act upon them in a number of different ways. They can make recommendations or referrals based on which scenario would have the best outcome.

MyFamily currently includes risk assessment and clinical decision support for many diseases, including hereditary and familial cancers, and common conditions such as diabetes. Other algorithms are currently under development. During the current pilot phase, only specific clinicians at Cleveland Clinic (and their patients) will have exposure to MyFamily. Widespread availability is an eventual goal and would be paramount in moving toward a healthcare system influenced by the notion of offering personalized healthcare.


Celebrating our Heroes

The Center for Personalized Healthcare honors Dr. Sullivan as a true champion for helping promote our mission.

Please help us Congratulate Dr. Daniel Sullivan, MD, the 2012 4th quarter recipient of the Personalized Healthcare Hero award.

The Personalized Healthcare Hero award is given quarterly to a Cleveland Clinic employee who demonstrates commitment to the personalized healthcare initiative, embraces personalized healthcare approaches in their daily activities, and advocates for integration of personalized healthcare into the standard practice of medicine. In addition, this individual has contributed to advances in personalized healthcare and supported the specific initiatives and projects sponsored by the Center for Personalized Healthcare. Recipients of this award will be announced quarterly in our E-newsletter and recognized formally once yearly.

This quarter’s recipient, Dr. Daniel Sullivan is currently the Medical Director for Community Internal Medicine, Solon Family Health Center. Dr. Sullivan has been instrumental in developing the concept of the MyFamily tool, a patient-entered family history collection tool which integrates into Epic, providing risk assessment/decision support for clinicians. The ultimate goal of MyFamily is to better facilitate the use of family history as a risk prediction tool, allowing for better prediction and prevention of disease and driving appropriate utilization of resources. Dr. Sullivan assisted with the clinical development of the MyFamily project, giving wise counsel to the clinical and technical design teams. His insight was particularly valuable in establishing an approach for practical and pragmatic integration into existing clinical workflows for the project. More recently, he and his practice team are participating as pilot users of the MyFamily tool, providing invaluable feedback as we continue to develop an efficient and clinically useful tool for our caregivers. Our team has enjoyed working with Dr. Sullivan. He contributes greatly with very thoughtful feedback and positive outlook towards personalized healthcare.

We applaud Dr. Sullivan for his work. We thank him for his partnership, and we look forward to working with him on future personalized healthcare initiatives.


Personal Healthcare Month: A Big Deal for Cleveland Clinic‚ Center for Personalized Healthcare

The Center for Personalized Healthcare recently celebrated Personal Healthcare Month in the State of Ohio this past November. Personal Healthcare Month was proclaimed by Governor John Kasich, and received full support from the Ohio Senate and House of Representatives. At the heart of the proclamation of Personal Healthcare Month is the recognition that preventing disease, diagnosing disease early, and customizing therapeutic interventions provide for better outcomes and quality of care for individuals, often times at a lower cost to the patient and the healthcare system. As part of this celebration, the Center for Personalized Healthcare hosted several events. Activities included information booths at the International Café on Cleveland Clinic’s main campus, Cleveland Clinic regional hospitals and family health centers, including Hillcrest Hospital, Lakewood Hospital, Richard E. Jacobs Health Center, and Beachwood Family Health Center. A table was also hosted at Great Lakes Science Center on Wednesday, November 21, and focused on the importance of collecting and sharing your family health history. The U.S. Surgeon General has designated Thanksgiving Day as National Family Health History Day. Thanksgiving Day is a great day to discuss your family health history since so many families spend time together. In addition, the Center for Personalized Healthcare sponsored a health talk at Independence High School featuring local chef Rocco Whalen of Fahrenheit restaurant in Tremont. Chef Whalen utilized his family health history to take steps to mitigate his risk for disease. To engage our clinicians in the celebration, we planned to host a guest speaker, Dr. Amalia Issa, to speak at a Grand Rounds and to our residents about pharmacogenomics and the use of pharmacogenomics information in clinical care. Unfortunately, due to inclement weather, Dr. Issa’s visit was cancelled. Look for Dr. Issa’s Grand Rounds in early 2013. The information booth that was planned for the final Cleveland Clinic farmer’s market was also cancelled due to weather.


Personalized Medication Program Ready for Prime Time

A new and exciting initiative from the Center for Personalized Healthcare is the Personalized Medication Program (PMP), which will be implemented in Q1 2013. The goal of this enterprise-wide initiative is to develop the system and infrastructure to integrate pharmacogenetic testing into clinical practice at Cleveland Clinic. This multi-disciplinary approach involved stakeholders from across the enterprise, including prescribing clinicians, CSO, pharmacy, RT-PLMI, genetics, bioethics, and legal. The PMP is fully integrated into the electronic health record system (EPICpic) and was designed so that Best Practice Alerts are triggered by the ordering of a prescription for ample evidence and FDA support for pharmacogenetics-informed prescribing exists. In addition, with the goal of avoiding duplicate ordering of tests, if a pharmacogenetic test already exists in EPICpic, the alert will be suppressed and the information will be presented in the prescription field.

The PMP currently includes two pharmacogenetic-drug pairs. The first pharmacogenetic-drug pair is thiopurine S-methyltransferase (TPMT) and azathioprine (AZA)/6-mercaptopurine (6-MP). Azathioprine and 6-mercaptopurine are medications that are used to treat several auto-immune disorders and malignancies. Based on the genotyping assay, there are three categories that patients fall into: homozygous wild type (average doses are appropriate), heterozygous variant (patients may require lower doses to avoid adverse reaction), and homozygous variant (patients should receive much lower doses to avoid serious adverse reaction). The second pharmacogenetic-drug pair is HLA-B*5701 and abacavir. Abacavir is an antiviral medication used in the treatment of HIV. Those patients who test positive for the HLA-B*5701 gene have an increased risk of a hypersensitivity reaction to abacavir.

The integration of pharmacogenetics into the standard of care at Cleveland Clinic presents an opportunity to provide better, more efficient and less costly care to our patients. It can help us avoid costly and sometimes fatal adverse drug reactions. Tailoring a specific drug and its dose based on known pharmacogenetic markers is one way in which we aim to personalize care for our patients.