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Center for Personalized Healthcare Spring 2013

Third Annual Personalized Healthcare Summit Coming Soon

The planning team for the 2013 Personalized Healthcare Summit is hard at work pulling together relevant speakers, topics and panels to address the clinicians and thought leaders in attendance this coming May.

This high profile event represents the collaborative nature of personalized healthcare and assembles leaders under one roof to examine the challenges and victories in the field. The theme for this year’s Summit is the progression of personalized healthcare from concept to practice.

Leaders from industry and academia and will be presenting on topics such as pharmacogenetics, test development, big data, patient experience, bioethics and nutrigenomics.

This is the third such event presented by Cleveland Clinic’s Center for Personalized Healthcare. The Center was established in January 2011 as a strategic initiative designed to integrate personalized healthcare (the use of unique patient information) into the standard practice of medicine, with the ultimate goal of encouraging proactive, targeted, and preventive care.

This two-day event, held at the InterContinental Hotel and Conference Center on Cleveland Clinic’s main campus, will consist of a series of talks, panels and interactive presentations by experts from a variety of medical settings. The long-term goal is to provide attendees with the knowledge to improve patient health and wellness by incorporating the proactive and preventive principles of personalized healthcare.

Dr. Kathryn Teng, Director for the Center for Personalized Healthcare reflects on the evolution of this annual event: “Planning for our Summit is hard work but we realize that as a leader in the field, it is up to us to bring together a diverse but relevant population; great relationships and ideas are born at these kinds of events.”

Dr. Teng quickly adds that the process of planning is never complete: “Our Summit requires long term planning as well as short term adjustments. We have retained an incredible amount of knowledge in the area of conference planning but more importantly, we are reaching into the vortex to hand pick the individuals we feel have the greatest impact on our attendees.”

Dr. Teng is also very positive about what the future holds. “We are exploring some new concepts that we feel will push personalized healthcare efforts forward next year. Our mission is to be on the cutting edge, to educate about what we and others are doing to improve the delivery of personalized healthcare, and to foster collaborations and partnerships through educational events such as this Summit. The door is open for everyone to participate in this event.”

The Ethics and Legal Side of Personalized Healthcare: An Interview With Experts to Raise Awareness

In May Cleveland Clinic is hosting its third annual Personalized Healthcare Summit. Among the many informative and timely discussions planned, is an interactive panel to examine the ethical, legal and practical challenges in genomic medicine. Dr Richard Sharp, a bioethicist specializing in patient views of genetic testing and Cristie Cole, a bioethicist with experience in health law recently shared their thoughts on the challenges that lie ahead.

CPH: What are some of the ethical and legal issues raised by developments in genomic medicine?

Dr. Sharp: One of the most challenging aspects of genomic medicine is that the range of clinical testing services is constantly changing. As a result, it's nearly impossible for clinicians outside of genetics to stay current with the state of the field. Our understanding of genetic influences on health and disease is also changing at an amazing pace. That's a great thing, since many of those findings will ultimately lead to new treatments and screening methods. One of the biggest ethical challenges today, though, is how to set realistic expectations about genomic testing since we still have so much to learn; what we can offer patients today will likely be very different from the tools that will be available in just a few years.

Ms. Cole: Many of the legal issues in genomic medicine arise from the rapid development of genomic sequencing and testing technologies, the commercialization of genomic medicine, and our evolving understanding of the nature of genes and the extent of genetic influence on health and disease. One of the most controversial issues throughout the world today is whether genes may be patented. Recently, an Australian Federal Court upheld Myriad Genetics, Inc.’s BRCA1 and BRCA2 patents. The United States Supreme Court is set to hear this issue on April 15, 2013 in the case of Association of Molecular Pathology v. Myriad Genetics. Its opinion could have wide-reaching implications for both the research and clinical communities. Additional legal issues include whether there is an enforceable right to know one’s own genetic information, concerns regarding privacy of genetic information, employment and health insurance discrimination, professional liability of clinicians, and regulation of genetic testing.

CPH: What steps can clinicians take now to prepare for new forms of genomic testing?

Dr. Sharp: I'd encourage clinicians to ally with the genetic professionals within their system. Our genetic counselors, for example, are available to help before, during and after testing. They are current on patients’ perceptions of and reactions to genetic testing. It's pretty clear now that all areas of medicine will be affected by new forms of genetic testing. Unfortunately, most doctors get very little training in genetics as medical students or residents. The good news is that this has changed in recent years.

Ms. Cole: I would also encourage clinicians to seek out and establish relationships with clinical geneticists and/or genetic counselors to whom they can refer patients or consult when necessary. Clinicians should also familiarize themselves with both state and federal privacy, consent, and access laws. It is important to remember that each state has their own set of laws that can have an impact on how a clinician integrates genomic medicine into their individual practice. I would also advise consulting with your state medical board for additional guidance.

CPH: What do you think patients should know about genomic medicine?

Dr. Sharp: Many patients have concerns that genetic information might be used against them in some way and may hesitate to pursue genetic testing because of worries that they might lose their job or health insurance if it turns out that they have "bad genes." In 2008, President Bush signed into law the Genetic Information Nondiscrimination Act (GINA), which protects patients from being fired or denied health insurance based on genetic information. I think it's important for patients to know about GINA and the protections that are in place to prevent misuses of genetic information.

Ms. Cole: Patients should also understand GINA’s limitations. It only applies to individuals who are asymptomatic and does not protect individuals from discrimination by disability insurance providers, long-term care insurance providers, mortgages, commercial transactions, or other areas. Moreover, a comprehensive set of laws protecting individual privacy of personal genetic information does not exist yet. The Privacy Rule of the Health Insurance Portability and Accountability Act (HIPPA) provides limited protection. It is only applicable to three classes of health care entities and does not provide a private right of action if violated. Given the market for genetic testing sold directly to consumers, patients should be aware that it is unlikely that HIPPA will apply to these companies.

Richard Sharp is Associate Director of the Center for Ethics, Humanities and Spiritual Care at Cleveland Clinic and Co-Director of the Center for Genetic Research Ethics & Law at Case Western Reserve University.

Cristie M. Cole, JD is a Fellow in the Cleveland Fellowship in Advanced Bioethics, a citywide program hosted by Cleveland Clinic.

Celebrating our Heroes

This quarter we have two recipients: Gina Petredis and Ryan Miday from the Office of Government Relations.

Ryan MidayGina Petredis

Gina Petredis is the director of government relations and brings 5 years of experience in government relations at Cleveland Clinic. Ryan Miday is the director of state government relations and oversees state affairs. From the inception of the Center for Personalized Healthcare, the Government Relations team has recognized the alignment of personalized healthcare with governmental interests in healthcare. They have been instrumental in guiding education and awareness about personalized healthcare towards elected officials, efforts which pave the way for future discussions regarding Cleveland Clinic’s vision for healthcare of the future.

Due to the efforts of Gina and Ryan, Governor Kasich declared November 2012 as Personal Healthcare Month for the State of Ohio, a proposal which was put forth jointly by Cleveland Clinic and Ohio State University. Personal Healthcare Month serves as a platform to bring awareness to personalized healthcare, an approach which focuses on prediction and prevention of disease and aims to engage patients in their healthcare.

Events held in Cleveland during Personal Healthcare Month focused on the importance of healthy food choices and family connections (and the importance of family health history) in creating healthier individuals, families, and communities. Subsequently, also due to the efforts of Gina and Ryan, Ohio’s Senate and House of Representatives lent their support to Personal Healthcare month, strengthening governmental support for the vision of better health for Ohioans.

Our team has enjoyed working with Gina and Ryan. We appreciate their expertise and experience in governmental relations, their commitment to Cleveland Clinic’s mission, and their passion for healthcare policy.

We applaud Gina and Ryan for their work. We thank them for their partnership, and we look forward to working with them on future personalized healthcare initiatives.

Getting Out There: How We Stay Current In A Rapidly Evolving Environment

A large part of operating an innovative department like the Center for Personalized Healthcare is knowing what is happening in the field. We rely on many sources of inbound materials such as newsletters, social media groups and professional journals to educate our employees, but that is not enough. Sometimes we just need to get out there—and that is exactly what Peter Balint (Project Manager) and Thad Meese (Business Analyst) did in January at The Personalized Medicine World Conference (PMWC).

This two-day event took place in Mountain View, California, and attracted thought-leaders in business, government, healthcare-delivery, research and technology. Aside from engaging talks covering topics such as genomics-based healthcare, bringing comprehensive genetic testing into routine medical practice and information processing for genomic & medical data, the event offered designated networking sessions.

According to Peter Balint, this kind of networking has high value: “I was able to reach out to many professionals in the field of personalized healthcare and share ideas, experiences and hopes for the future. The stakes are high when your fellow attendees are major stakeholders in the future of personalized healthcare. Most are willing to share their thoughts as well as entertain new ways of approaching existing topics.”

According to Thad Meese, there are also business opportunities waiting to be discovered: “I equate this professional activity to casting a large net. By the end of the two-day period, I will have met a significant number of business professionals. Granted, I can’t engage with each and every one immediately but we are building relationships and these give our business side some depth for tomorrow and beyond.”

Both Thad and Peter returned to Cleveland Clinic not only with new knowledge in the area of personalized healthcare, but also with a few specific ideas about making Cleveland Clinic’s Personalized Healthcare Summit one of the most effective events of its kind.

Personalizing Communication Through Social Media

According to the Pew Internet and American Life Project, 84% of Americans use the Internet to get information they need—healthcare information not excluded. In order to reach their patients and provide accurate, timely health information, healthcare organizations have increased their presence on the Internet and social media channels. Cleveland Clinic, never furtive about technology and innovation, has been recognized as a leader in the area of social media as evidenced at the Content Marketing World Health Summit held in Cleveland, Ohio in 2012. At the event, Cleveland Clinic was applauded for their advances in social media, especially with respect to the Health Hub blog site. Cleveland Clinic’s social media presence also includes Facebook, Twitter, LinkedIn, and YouTube. The Facebook page has over 300,000 likes.

Cleveland Clinic’s Center for Personalized Healthcare was an early (social media) adopter and in many ways helped to pioneer what has become today’s robust and informative Health Hub portal. Health Hub includes health information provided by featured experts as well as teams, such as Wellness and Women’s health. Dr. Kathryn Teng is one of the original featured experts; now there are over 30. Dr. Teng’s posts revolve around the fields of primary care and personalized healthcare. Topics have included family health history, nutrigenomics, and pharmacogenetics.

In addition to Health Hub, the Center for Personalized Healthcare is reaching its audience through other means, such as this e-newsletter, website, and other Cleveland Clinic communications, such as doc.com, Monday Morning Quarterback, and Rounds. In keeping with the trends in social networking, the 2013 Cleveland Clinic Personalized Healthcare Summit has plans to incorporate Twitter as a new and exciting way for attendees to participate in the summit. If you are aware of any other outlets that would benefit from information about personalized healthcare, please send them to cphinfo@ccf.org.