Expand Content

Center for Personalized Healthcare Spring 2012

Leveraging Technology to Improve Patient Outcomes

Sign Up!

Receive our newsletter, emailed quarterly.

High tech solutions are currently in development at Cleveland Clinic. Nascent methodologies are finding their way into the standard practice of medical care as teams of clinical and technology experts bring their fields of expertise together to build a better model of patient care.

Personalized healthcare is real and it is being delivered now at the Cleveland Clinic. The Center for Personalized Healthcare (CPH) has already begun to influence clinical care for patients at the Cleveland Clinic through new education and awareness campaigns, specialized clinical collaborations, and investment in the development of new foundational technologies.

A cross-functional CPH and Genomic Medicine Institute (GMI) team of clinical and technology experts is currently leading the development of a robust technical platform to collect comprehensive and complete family histories and deliver decision support to clinicians at the point of care. The goal of such technological innovation is to enable clinicians to better utilize family history as a predictive tool for disease and health in a time-efficient manner. One of the first steps to broader development and implementation of this platform is proving early clinical utility through the development of similar proof-of-concept technologies and associated pilots in one or more clinical settings.

One such prototype technology has delivered measurable clinical efficiencies and a wealth of data about the patient experience related to engaging new web-based applications to contribute to their personal clinical care. A prototype tool known as MyFamilyHealthHistory or MyFHH, has been available in many of the medical genetics cancer clinics since 2009. The GMI pioneered the development of the technology and continues to benefit from its inclusion in medical genetics clinics today.

In January the MyFHH questionnaire was introduced to the Taussig Cancer Institute’s (TCI) Breast Cancer Survivorship clinic. In this setting, patients with an appointment scheduled in the TCI Breast Cancer Survivorship clinic are invited via email to a website where family structure and detailed history of cancer can be entered before their appointment. The information is aggregated and translated into an electronic pedigree or family tree. The electronic pedigree is available for a certified genetic counselor to review.

This new approach to personalized healthcare combines new technology and modified clinical workflows allowing a certified genetic counselor to easily find and review the patient’s pedigree and determine if there is an underlying risk for genetic disease.

The pilot has been active for 10 weeks. During that time 15 patients have been asked to complete the online family disease history questionnaire. The results are tremendous and surpass the early expectations that the delivery team had established for the first three months of the pilot. Six (6) of these first 15 patients (40%) asked to participate have been found to be at an increased genetic risk for cancer. These patients have been referred for a follow-up encounter with medical genetics where genetic testing can be ordered if appropriate and a care plan can be tailored for the patient.

The success of the new pilot in the Taussig Cancer Institute has proven in new and exciting ways that there are tremendous opportunities to maximize the quality of patient care through advancements in decision support technologies related to personalized healthcare. All of the new solutions will be firmly rooted in evidenced-based medicine and will facilitate the delivery of clinically actionable information to the point of care.

CPH continues to work collaboratively with its clinical partners to develop additional decision support technologies based on family history, molecular diagnostics, and other risk prediction information, with the ultimate goal of enabling clinicians to better personalize healthcare for patients and their families.

To learn more about the decision support platforms we are building, contact Megan Doerr, MS, CGC at either 216.445.5850 or doerrm@ccf.org or send the CPH an email to cphinfo@ccf.org.

Timely Survey Confirms the Need for Personalized Healthcare at Cleveland Clinic

Dr. Kathryn Teng, Director, Center for Personalized Healthcare, recently traveled to the Up Close and Personalized (UPCP) International Congress on Personalized Medicine. This four-day conference held in Florence, Italy focused on various aspects of personalized healthcare, including clinical, genomic, pharmacogenomic, and biomarker data. The conference also focused on bioinformatics and clinical decision support tool technology. Dr. Teng presented her work “Genetics Knowledge & Needs Assessment Survey of Primary Care Physicians at an Academic Medical Center.” The goal of Dr. Teng’s research was to assess practicing primary care physicians’ knowledge regarding personalized healthcare informed by genetics, genomics, self-efficacy, and educational needs.

After receiving IRB approval, a web survey was sent to 120 Cleveland Clinic practicing primary care physicians, of which 91 responded (75% response rate); 32% were from main campus, 60% were from family health centers, and 8% were from regional hospitals. The results showed that the physicians were comfortable collecting a comprehensive family history, identifying patients at increased risk for disease, and referring patients to genetic professionals for further evaluation. The results also showed that the physicians had a low self-efficacy regarding counseling patients about genetic services, screening and testing options, and bioethical issues including Genetic Information Nondiscrimination Act (GINA) (Figure 1). GINA is a federal law that was signed into effect in 2008 and protects people from being discriminated against by employers and health insurers based on their genetics. In addition to these findings, the results indicated that physicians were willing to learn more about personalized healthcare through venues such as targeted live educational interventions, such as conferences. Interestingly, the greater majority of physicians in this study (>80%) indicated no interest in podcasts, newsletters, or mobile applications (Figure 2). Study participants expressed a fairly uniform interest in personalized healthcare topics, with pharmacogenomics being of the greatest interest (Figure 3).

In order to meet the needs of the primary care physicians, Dr. Teng and Center for Personalized Healthcare have established several initiatives to address the knowledge gaps identified in this study. Curricula for both the medical school and the Internal Medicine residency program are being developed in order to reach future physicians during their medical training. Another initiative is the annual Personalized Healthcare Summit. This year’s summit, which will be held on May 31, 2012 at the Intercontinental Hotel and Conference Center in Cleveland, Ohio, will focus on personalized healthcare for the practicing clinician. Topics will include foundations in genetics and genomics, educating at the point-of-care using electronic systems, and research controversies. If you are interested in attending the summit, please visit www.clevelandclinic.org/phcsummit to register.

Figure 1

Fig 1: Self-efficacy of study participants in relation to personalized healthcare topics.

Figure 2

Fig 2: Study participants greatly prefer live continuing education events, such as conferences, and do not have interest in podcasts, newsletters, and mobile applications.

Figure 3

Fig 3: Indicated interest in personalized healthcare topics by study participants.


CPH has been proactive in addressing the need to incorporate pharmacogenetics into clinical practice at Cleveland Clinic. One initiative has been the creation of the Pharmacogenetics Strategy Advisory Board. This advisory board, which is comprised of Cleveland Clinic physicians with diverse specialty backgrounds, is charged with the task of identifying and developing the strategic direction of projects relating to the integration of pharmacogenetics into clinical practice. The advisory board members are asked to participate in three ways: advise the team in regards to project development and offer suggestions for improvement, approve formalized plans regarding pharmacogenetic projects and collaborations, and advocate for the projects selected and the building of evidence to support the use of pharmacogenetics in clinical practice.

In addition to the creation of an advisory board, CPH is participating in comparative effectiveness and outcomes research; namely, a clinical trial sponsored by Iverson Genetic Diagnostics, Inc. This clinical trial is designed to investigate warfarin, an anticoagulant drug, which has a narrow therapeutic window and can cause either undesirable hemorrhage or thromboembolism if not kept strictly in its target range. The aim of this study is to incorporate pharmacogenetic testing prior to drug initiation in order to achieve target therapeutic dose more quickly and accurately and thereby reduce the number of adverse events experienced by adult patients. In addition to the warfarin study, CPH has also applied for a grant through Clinical Translational Science Collaborative (CTSC) to study race and genotype on tacrolimus pharmacokinetics. Tacrolimus is an immunosuppressant drug that is often used to prevent organ rejection in kidney transplant recipients, and the metabolism of this drug is thought to differ depending on race and genotype. If this grant is obtained, one aim of this study is to develop an assay to test for the genes involved in tacrolimus metabolism. Another aim of the study is to observe the drug response of selected patients awaiting renal transplantation in relation to race and genotype.

Stay tuned for more pharmacogenetics updates from CPH.