The Patient Advocates

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The PATIENT ADVOCATES

Jon Butko
Jaime Cohen
Steven V. Edelman, M.D.
Linda Kitlinski
Kristin Patton
Dorothy Smith, Pharm.D.
Joseph Tonning, M.D., M.P.H., R.Ph.
Meg Walsh
Jeanne Zucker

The Patient Advocates PATIENT CENTRIC IS AN UNDERSTATEMENT WHEN DESCRIBING THESE INDUSTRY LEADERS. THEY TAKE THEIR RESPONSIBILITIES IN ENSURING PATIENT RIGHTS VERY SERIOUSLY AND WANT TO ENSURE THE PATIENT EXPERIENCE IS IMPROVED AND PATIENT COMMUNICATIONS ARE CLEAR AND EFFECTIVE. For them, the patient is the all important component in the healthcare continuum.

Jon Butko may be quiet and humble, but his creativity is certainly not. He has an extraordinary knack for finding the connection between seemingly disparate concepts and forging them into reality. Mr. Butko is regarded by his peers as a brilliant generator of ideas, who consistently finds new and better ways to satisfy his clients’ objectives. The images he creates reflect the pride he takes in his work, and his desire for ensuring the outcome is perfect is evident in the time he commits to planning recruitment and retention programs as well as designing materials. No matter how good a job has been done, Mr. Butko believes it can always be done better. In 2006, Mr. Butko took on a significant professional challenge. The explosion of global studies and the concomitant reduction in timelines meant that literature needed to be designed quickly and for many countries, and therefore the materials needed to be culturally appropriate. Mr. Butko recognized what was needed was a system that offered more flexibility and efficiency, and one that could quickly customize patient literature to the languages, customs, and legal regulations of countries throughout the world. To solve these challenges, Mr. Butko created ADapt, a Web based database publishing and design technology that simultaneously customizes and deploys patient materials to any number of countries or study sites. To ensure materials were culturally appropriate, Mr. Butko brought in third party translation companies, study sites, and country project leaders. In developing materials that are user friendly, compassionate, and informative, Mr. Butko has led his team to try new things, and sponsors in turn are able to appreciate that not all marketing materials are created equal. To build patient trust, he is working with clients to help them understand the need to connect with potential patients on their terms through targeted channels of communication. Mr. Butko welcomes the opportunities to move away from broad reaching generalizations to highly targeted conversations thanks to the eruption of online media and social net working/community based technologies. As he points out, patients are connecting globally not only through their association with an illness or disease but through their common interests in all aspects of their lives. This enables those in the industry to target messages and study branding in a way that speaks to patients’ core motivations for wanting to participate in a study. Companies can now quickly focus on these motivations and develop strategies that cut through the clutter of competing clinical trials as well as marketing programs for already approved therapies. With a real passion for the work, Mr. Butko likes the chance to educate patients about the importance of clinical research studies. But perhaps most surprisingly for a designer, he revels in the metrics and patient focus group data available to him at MediciGlobal. NAME: Jon Butko TITLE: Executive Director of Strategy and Innovation COMPANY:MediciGlobal EDUCATION: Studies in Graphic Design, Digital Media, and Marketing, University of the Arts, Philadelphia PLACE OF BIRTH: Princeton, N.J. ON HIS READING LIST: Tigers at Twilight, by Mary Pope Osborne; A Princess Primer, by Stephanie True Peters; One Duck Stuck, by Phyllis Root and Jane Chapman; Letters of Fyodor Michailovitch Dostoevsky to His Family and Friends, translated by Ethel Colburn Mayne FAMILY: Wife, Carolynn; son, Aidan 5, daughters, Brynn 3, and Maeve, 1 FIRST JOB: Graphic designer at a medical equipment trade magazine in his junior year of high school (essentially, he’s been in the lifescience related marketing industry since he was 16) HOBBIES: Photography, drawing, artistic Electro etching, ice carving, building Legos, and playing Barbies INNOVATIVE. HUMBLE. Quietly Changing the World of Patient Recruitment If there’s ever a dearth of ideas, Mr. Butko likes to get things kick started again — literally. He’s been known to break out the kickball for a short game with his design team to get the neurons firing. Though he is often the generator of ideas, he insists he is only as good as the team members who support him, and he will not take direct credit for initiatives that were brought to life by the collaborative contributions and work of others. He is thrilled by the innovative, collaborative, determined, creative, and competitive natures of those around him, and he applauds those who have the confidence to take educated risks and who find fulfillment in deriving positive results from the zaniest of ideas. By understanding the team and drawing on their experiences and concepts and encouraging open dialogue, Mr. Butko is able to make productive collaborations flourish. GETTING PERSONAL Jonathan Butko is Executive Director of Strategy and Innovation at MediciGlobal (mediciglobal.com),King of Prussia, Pa., directing the strategy and creative execution of all advertising and study presentation materials for patient recruitment, retention, and corporate projects. Before joining MediciGlobal, Mr. Butko served as Creative Services Director with AdMed Inc., designing and developing interactive elearning modules,training manuals,and customized training workshops for major pharmaceutical clients such as Glaxo SmithKline, Pfizer, BristolMyers Squibb, and The Medicines Company. While Owner and Creative Director of LucidCircus Inc., Mr. Butko gained experience working with other diverse clients such as MTV/VH1,Levi’s,TBWA/Chiat/Day,Grey Global, Bell Labs/Lucent Technologies,Safeguard International,The Mills Corp.,The National Adoption Center,The Archdiocese of Philadelphia, and the City of Philadelphia. He has been recognized for excellence in his field through various awards, including numerous Philly Gold Awards. Designer Jon Butko is transforming patient recruitment and retention for clinical trials around the world. Jon BUTKO THE DATA DIVA Few people get as excited about data analysis for patient recruitment as Jaime Cohen. For her, this is the key that unlocks successful patient enrollment, and that’s her professional raison d’etre. Ms. Cohen sees what sponsors often miss: a gold mine of data that many companies just don’t know how to leverage. By working with clients to slice and dice the information, she helps them turn information into something that can bolster patient recruitment. And she does this in a seamless and efficient way. More than one sponsor’s data management team has gained a newfound appreciation for the value of all the “ones and zeros” in their databases — something that they couldn’t perceive before Ms. Cohen came along. But it’s not just an ability to manipulate data that makes Ms. Cohen an inspiration to colleagues and clients. What sets her apart is the combination of professional expertise and exceptional people skills, seasoned with unmitigated enthusiasm for what she does and a determination to make a difference. An optimist, Ms. Cohen is always looking to solve the problem and believes there’s nothing that can’t be figured out or over come given the right resources and resolve. Her conscientious approach to her work is infectious as she commits 100% to every task, always seeing projects through to their conclusion. Her colleagues agree that it would be difficult to find a more articulate, engaging, and down right likeable “numbers cruncher.” During her career in the clinical field, she has worked on hundreds of trials and helped clients achieve patient recruitment success. She got her professional start 22 years ago, with the charge to recruit 220 women who’d given birth in Philadelphia’s inner city and suburban hospitals within the previous 24 hours. To achieve her tar get, Ms. Cohen approached more than 800 women, gathered preliminary demographic data, and sent the information to the data coordination center. The following week, she received a stratified list telling her who to call back. Her hit rate was extraordinary, with just 250 calls to net 220 study participants. Ms. Cohen describes the growing discipline of patient recruitment as marketing meets clinical research, applied protocol by protocol. One of the biggest problems with clinical trials, Ms. Cohen maintains, has to do with site readiness. Site activation, she says, is the fundamental currency of patient recruitment; the number of operational site months is a critical success factor for any study. All too often, however, contracting and ethics committee approvals are conducted in isolation by each site, and clinical teams feel locked out of the process. Her experience has taught her that with good planning and an understanding of all players’ business objectives, needs, and priorities, sites can be activated simultaneously as opposed to a staggered fashion, which can make a huge difference in successful patient enrollment. She is also an accomplished and dynamic trainer, having led dozens of seminars that focus on problem solving, maximizing resources, team building, and reinvigorating stalled recruitment programs. She has experience speaking to all members of the study community, including investigators, sponsors, monitors, site personnel, and patients. Her love of science dates back to the 7th grade, when she learned about the scientific method, and was further cemented in her senior year at college when she took a research methods class. Ms. Cohen was studying clinical psychology at the time and was trying to decide between existentialism and research. Thanks to a professor who was able to put data and probability into perspective, Ms. Cohen was hooked. Research and data analysis won the day. GETTING PERSONAL Jaime Rightmyer Cohen is Team Leader, Data Management and Analysis, at TCN eSystems LLC (tcnesystems.com), Newton, Mass., a software company providing a first comprehensive patient recruitment management sys tem for the clinical trial market. TCN was spun out of BBK Worldwide, where Ms. Cohen had worked for five years. Before joining BBK, she led program management for the schizophrenia research group at Massachusetts General Hospital, and she gained field, data, and systems management experience at New England Research Institutes. NAME: Jaime Cohen TITLE: Team Leader, Data Management and Analysis COMPANY: TCN eSystems LLC EDUCATION: B.S., Clinical Psychology,Tufts University DATE AND PLACE OF BIRTH: April 5, 1966; Philadelphia ON HER READING LIST: Keeper of Dreams, by Orson Scott Card; Set This House in Order, by Matt Ruff; The Glass Castle, by Jeannette Walls THE QUALITIES IN OTHERS THAT INSPIRE HER: The ability to think quickly on one’s feet and to do a 180degree shift in perspective to see situations from the other side and to find a new direction, a nuance that allows one to make a quantum leap versus an incremental difference CONSCIENTIOUS. OPTIMISTIC. JAIME COHEN A combination of professional expertise and exceptional people skills, seasoned with unmitigated enthusiasm for making clinical trials successful, set Jaime Cohen apart. July / August 2008 PharmaVOICE The PATIENT ADVOCATES

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