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October 28, 2013 / Issue 48

In this issue:

AHIMA’s annual convention to address key issues facing healthcare industry

Strategies for clinical documentation improvement at AHIMA Convention

AHIMA Announces support for Blue Button Initiative

AHIMA honors Marjorie S. Greenberg with its Exemplary Service Award

AHIMA presents Truman Medical Centers with Grace Award

AHIMA recognizes 12 members for outstanding contributions

A kidney for $10,000? Paying donors actually pays off, new study finds

Gene editing could lend hope to thousands


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AHIMA

AHIMA’s annual convention to address key issues facing healthcare industry

ATLANTA – October 28, 2013 – At this pivotal time in healthcare when increases in health information data and technology initiatives are bringing new challenges and opportunities to improve the access, quality and efficiency of healthcare, health information management and technology professionals, healthcare executive and other healthcare professionals will gather in Atlanta, October 26-30, for the American Health Information Management Association’s (AHIMA) 85th Convention and Exhibit.

Drawing on its 85 years of experience leading the advancement and ethical use of health data and information to promote health and wellness worldwide, the event will provide workshops, presentations, educational sessions and discussions about the current challenges and opportunities facing healthcare professionals as a result of emerging payment, regulatory, and technological issues.

Specifically, sessions during the convention will address diverse topics such as:

  • Information and Data Governance:
    • Making data integrity, quality and stewardship a reality
    • Managing and using EHR data for multiple purposes
    • Dealing with the promise and pitfalls of new approaches such as copy and paste
    • Responding to challenges regarding patient matching and patient identity management
  • Emerging Trends and Innovation:
    • Using smart phones, tablets and other mobile devices
    • The effect of technology and healthcare reform on the HIM workforce
  • The Latest in Privacy and Security:
    • Updates to the HIPAA/HITECH omnibus rules
    • Managing the privacy and security of patient portals
    • Mobile device security and the next generation of privacy and security issues
  • ICD-10:
    • Approaches to successful implementation
    • Clinical documentation improvement and data quality

The Convention will also feature the AHIMA Foundation Thought Leaders Lecture and the Health Information Innovation Leadership Series. These series showcase innovative concepts and initiatives to transform the future of health information and healthcare through workforce development and throughout the academic, corporate and government spheres.

This year’s speakers include:

  • Joseph F. Coughlin, PhD, director of the Massachusetts Institute of Technology AgeLab will present, “Disruptive Demographics: New Technology, Older Consumers & the Future of Health & Wellbeing.”
  • Mark Blatt, MD, MBA, worldwide medical director, Enterprise Solution Sales, Intel, will present “Collaborative Workflows: Thriving in the Era of Healthcare Delivery Reform.”
  • Travis Good, MD, MS, MBA, co-founder and CEO CatalyzeIO, will present “Connected Health – The Coming Wave in Search of a Beach.”

General Session keynote speakers will entertain and inspire those attending AHIMA’s Convention. This year’s keynotes include:

  • Anna Deavere Smith, award-winning actress, playwright. She will share insight and excerpts from her hit play Let Me Down Easy in her presentation Healthcare and the Human Spirit. The genesis of the play was research she conducted for the Yale School of Medicine.
  • Henry Winkler, actor, author, producer and director, and Marlee Matlin, Academy Award-winning actress and activist. Winkler, who considers Matlin an adopted daughter, has been encouraging and championing her career since she was 12-years-old. Winkler, who has battled dyslexia his entire life and Matlin, the only deaf actress to win the Academy Award for Best Actress in a Leading Role, will speak about their profound connection. They will explore motivational themes of overcoming adversity, disability and believing in oneself.
  • Dr. Travis Stork and Dr. James Sears, hosts of the syndicated Emmy Award-winning informational talk show The Doctors, will share insights and discuss top health concerns.

In addition to the educational and motivational sessions, media can visit the Innovation Pavilion and Exhibit Hall with more than 225 exhibitors, featuring cutting-edge products.

For more on AHIMA, visit www.ahima.org.

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AHIMA

Strategies for clinical documentation improvement at AHIMA Convention

ATLANTA – Oct. 25 – The new ICD-10-CM and ICD-10-PCS coding systems – which increase the number of diagnosis and procedure codes from about 13,000 to over 141,000 – will offer much more detailed information on patient health. Physicians and other healthcare professionals must be educated not just about the new codes, but how documentation must be accurate, timely and more specific to enable coding with ICD-10. While goals of clinical document improvement (CDI) programs are geared toward clinical data integrity and reliability, an important and undeniable benefit of CDI is improved capture of data, and this enables better coding. Successful clinical document improvement (CDI) programs have many benefits including positive impact on the following:

  • Patient care;
  • Clinical data and information integrity;
  • Reliability of quality measures and demonstration of meaningful use; and
  • Timely and appropriate claims payment.

“Clinical documentation impacts both the quality of care and reimbursement and bringing physicians up to speed about the level of granularity included in ICD-10 is one of our most important jobs as health information management professionals,” said Theresa Jackson, RHIA, director of health information management (HIM), University of Kansas Hospital, Shawnee Mission, Kan.

“For example, in ICD-9, myocardial infarction (MI) is coded in one of two categories depending on factors such as the acuity, duration and timing of MI. In ICD-10-CM, many additional details are recorded, such as information about the type and sequence of any underlying diseases, as well as factors such as tobacco use and exposure to environmental/workplace smoke; and, where applicable, the status of administration of the clot-busting drug tPA performed at a different facility within 24 hours of admission to the current facility. This will help guide the treatment a patient receives. ICD-10 should be seen for its benefits and not as a burden.”

Jackson’s co-authors for the presentation, “Pains for Gains: Creating a Positive Culture within a CDI Program,” are Gretchen Dixon, MBA, CCS, CHCO, and Anita Archer CPC, AHIMA approved ICD-10 trainers, Hayes Management Consultant, Huntington Beach, Calif.

In a second presentation, Kristi Richison, RHIA, director of HIM, Hillcrest Medical Center, Ardent Health Services, Tulsa, Okla., will stress the importance of assembling a cohesive, multi-disciplinary team of HIM and clinical documentation specialists, coders and physicians.

“There are differences between what’s going on with the patient in real time versus coding guidelines; there are gaps between coding and clinical speak that we must address,” she said.

“At our facility, we conduct chart reviews and hold one-on-one meetings with physicians to discuss deficiencies in documentation. After another chart review, there is a follow-up meeting for which we prepare a physician dashboard that includes the number and type of documentation queries, response rates, and issues such as missing discharge summaries, physical exam results and other omissions that can influence revenue.”

Co-author of Richison’s presentation is Ann M. Meehan, RHIA, vice president, HIM, Ardent Health Services, Nashville, Tenn.

Other strategies for successful CDI to be shared by the presenters include:

  • Gain the buy-in of leadership, including the CEO,CFO, CMO, and CMIO.
  • Conduct specialty-specific training and enlist a physician advocate for each specialty. Provide education tools for physicians by specialty, including online training; one-on-one meetings to discuss specific cases and queries; and presentations at department meetings.
  • Expand the staff of clinical documentation specialists (CDS), as needed.
  • Promote coder/CDS collaboration through tactics such as pairing each coder with a CDS for coder training and the handling of queries.
  • Perform chart reviews and implement dual coding to identify gaps in documentation well in advance of ICD-10 implementation.
  • Provide opportunities for greater CDS visibility to and interaction with clinical staff.

Richison and Jackson will describe their organizations’ CDI programs during presentations at the 85th Annual Convention and Exhibit of the American Healthcare Information Management Association (AHIMA), October 26-30, in Atlanta.

“As the industry’s leading authority on ICD-10 preparedness, AHIMA is committed to making a wide range of tools available to HIM professionals as they work to make the transition from ICD-9 to ICD-10, including presentations at Annual Convention that address the tasks such as CDI that must be accomplished before the ICD-10 compliance deadline in 2014,” said AHIMA CEO Lynne Thomas Gordon, MBA, RHIA, CAE, FACHE, FAHIMA.

For more on AHIMA, visit www.ahima.org.

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AHIMA

AHIMA Announces support for Blue Button Initiative

ATLANTA – Oct. 28, 2013 – The American Health Information Management Association (AHIMA) announced today that it will embark on a campaign to encourage its Component State Associations and members to actively support the Blue Button Initiative to promote access to personal health records (PHRs).

The announcement was made at AHIMA’s 85th Annual Convention and Exhibit in Atlanta.

The Blue Button is a national program that allows patients to view online and download their PHRs. Several U.S. government agencies, including the Departments of Defense, Health and Human Services and Veterans Affairs, participate. The Blue Button program also has pledges of support from many stakeholders including providers, health plans and personal health record vendors. Organizations and sites that use the Blue Button allow consumers to download their health data and create medical histories, which can then be shared with all their healthcare providers.

“We’re pleased to announce our support for this important national initiative, and we’re certain our members will rally around more patient access to health information,” said AHIMA CEO Lynne Thomas Gordon, MBA, RHIA, CAE, FACHE, FAHIMA. “The Blue Button campaign aligns perfectly with AHIMA’s mission of making health information available where and when it’s needed.”

AHIMA has taken the Blue Button Pledge, and is encouraging all its more than 67,000 members to do so as well. Members also are being encouraged to spread the word to their employers, family, healthcare providers, friends and fellow HIM professionals. In addition, AHIMA is asking its Component State Associations to become Blue Button Pledge supporters.

This effort is part of AHIMA’s strategic plan to engage consumers in their healthcare by actively participating in the capture and use of their health information. AHIMA’s offers a website, myPHR.com, to provide patients with a plan for developing a personal health record, as well as information about the health information landscape. The support for the Blue Button campaign also ties into one of the components of AHIMA’s strategic plan – advancing the public good.

“More than 80 million Americans are now able to access their health information through the Blue Button program,” said Marsha Dolan, MBA, RHIA, FAHIMA, co-chair of AHIMA’s Consumer Engagement Council. “We’re confident that with the support of AHIMA members, we can extend access to even more people.”

The Office of the National Coordinator for Health Information Technology (ONC), part of the Department of Health and Human Services, now has a role encouraging broader use of Blue Button and enhancing its technical standards. In 2014, a new tool will be available to help consumers find out which providers, health plans and others offer Blue Button.

Those at the AHIMA Convention can learn more by viewing the Blue Button poster developed by members of the AHIMA Consumer Engagement Practice Council. A session on Consumer Engagement to be presented on Tuesday, Oct. 29 by Vera Rulon MS, RHIT, FAHIMA, director of external medical communications, at Pfizer Inc, will address patient empowerment through access to their personal health information and how this improves patient- provider communication. “This is an exciting time for consumers as we continue to provide tools and resources that will allow them to take better control of their health and overall quality of care,” said Rulon.

For more on AHIMA, visit www.ahima.org.

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AHIMA

AHIMA honors Marjorie S. Greenberg with its Exemplary Service Award

ATLANTA – Oct. 28, 2013 – The American Health Information Management Association (AHIMA) today presented Marjorie S. Greenberg, MA, with its Exemplary Service Award in recognition of her outstanding career and dedication to the health information management (HIM) profession.

Greenberg has served as Chief of the Classifications and Public Health Data Standards Staff (CPHDSS) at the National Center for Health Statistics (NCHS) since the mid-1990’s and will retire on November 30. While at NCHS, Greenberg led the effort to bring ICD-10-CM, a more robust coding system that will lead to improved patient care and reduced costs, to the United States. She is head of the World Health Organization (WHO) Collaborating Center for the Family of International Classifications (FIC) for North America and chaired the WHO-FIC Education Committee from 1999 to 2010. Since 1982, Greenberg has served as executive secretary to the National Committee on Vital and Health Statistics, which advises the Secretary of Health and Human Services on health information policy.

“I congratulate Marjorie on this well-deserved achievement,” said AHIMA Board President/Chair Angela Kennedy, EdD, MEd, MBA, RHIA, CPHQ. “Marjorie’s passion and dedication have truly made an impact on the HIM industry. Her work reflects AHIMA’s mission, and it is with pride that we present this award to her.”

Greenberg is a founding member of the Public Health Data Standards Consortium and serves on the Consortium Board of Directors; she recently stepped down as the Consortium’s federal representative to the National Uniform Billing Committee and National Uniform Claim Committee.

Because of Greenberg’s areas of interest and expertise – which include health data standardization, uniform health data sets, health classifications, training and education, data policy development, and evaluation policy – AHIMA’s Board of Directors selected her for this honor.

“This award is given only when AHIMA’s Board of Directors finds an appropriate representative who has shown loyal service and outstanding support of the HIM community,” said AHIMA CEO Lynne Thomas Gordon, MBA, RHIA, CAE, FACHE, FAHIMA. “I commend the Board for selecting such an exceptional recipient. Marjorie’s commitment to our industry is unmatched.”

For more on AHIMA, visit www.ahima.org.

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AHIMA

AHIMA presents Truman Medical Centers with Grace Award

ATLANTA – Oct. 29, 2013 – Truman Medical Centers is being honored for its innovative approach to health information management by the American Health Information Management Association (AHIMA). Today, the healthcare system was presented with AHIMA’s Grace Award at the association’s 85th Convention and Exhibit in Atlanta.

Named for AHIMA’s founder Grace Whiting Myers, the AHIMA Grace Award: In Recognition of Excellence in Health Information Management honors healthcare delivery organizations that demonstrate effective and innovative approaches in using health information to deliver high quality healthcare. This is the second consecutive year AHIMA has given the award.

Truman Medical Centers, based in Kansas City, Mo., was recognized for its use of Cerner’s Lighthouse Solutions to not only track, but prevent, patient falls and pressure ulcers to improve patient care and decrease hospital stays. One impressive result was reducing the hospital-acquired pressure ulcer rate from 6 percent to less than 2 percent.

TMC’s Health Information Management (HIM) department is involved in strategic planning, business intelligence and data analytics, and leads Truman’s annual business plan, the Community Health Needs Assessment and the annual Missouri Hospital Association survey.

“These efforts, along with Truman’s implementation of a patient portal and participation in health information exchange, align with AHIMA’s strategic goal to ‘Drive the Power of Knowledge: Health Information Where and When It’s Needed,’” said AHIMA CEO Lynne Thomas Gordon, RHIA, MBA, CAE, FACHE, FAHIMA. “TMC’s HIM department is an excellent model of the leadership we encourage our members to achieve.”

Evaluation criteria included how organizations contribute to a patient-centered model of care, advance electronic health records and integrate HIM throughout their organization.

“We see firsthand every day the importance of having quality health information to drive our choices, whether they are decisions about how to treat a patient or how to better serve our community,” said John W. Bluford, President/CEO of TMC. “Our HIM department plays a critical role in our organization, and we are very honored by this recognition from AHIMA.”

Marcia Johnson, TMC associate administrator of strategy, planning and informatics, accepted the award today.

The Grace Award judging panel is composed of experts from healthcare delivery organizations, academia and HIM associations including AHIMA members. Judges for the award in 2013 include: Charlotte S. Barrett, MBA, RHIA, FACHE, Assistant Vice President, ICD-10 Implementation, University of Miami Health System; Gloryanne H. Bryant, BS, RHIA, CDIP, CCS, CCDS, National Revenue Cycle Director, Coding Quality, Systems and Support, Kaiser Permanente; Richard Correll, MBA, COO, College of Healthcare Information Management Executives (CHIME); Jane D. Duckert, MA, RHIA, Director, University of Wisconsin Hospital & Clinics; Barbara Odom-Wesley, PhD, RHIA, FAHIMA, HIT Program Chair, DeVry University; Helga Rippen, MD, PhD, MPH, Director Science & Tech Policy, Rand Corporation; Julio C. Silva, MD, MPH, Chief Medical Information Officer, Rush University Medical Center; Stacy L. Sochacki, Executive Director, National Association for Healthcare Quality; and Julie Wolter, MA, RHIA, FAHIMA, Associate Professor, Saint Louis University.

Whiting Myers established AHIMA in 1928 in partnership with the American College of Surgeons who wanted to “elevate the standards of clinical records in hospitals and other medical institutions.” This farsighted recognition of the importance of medical record quality to patient care and research underlies the organization today.

For more on AHIMA, visit www.ahima.org.

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AHIMA

AHIMA recognizes 12 members for outstanding contributions

ATLANTA – Oct. 28, 2013 – The American Health Information Management Association (AHIMA) honored 12 individuals and organizations at its annual AHIMA Triumph Awards today. The awards recognize excellence, dedication and service of health information management (HIM) professionals who have made outstanding contributions to the field.

The award presentations were made during AHIMA’s 85th Annual Convention and Exhibit in Atlanta.

“It’s with great pride that we honor these professionals who serve as inspiration for all our members and who have made the HIM industry the critically important one it is today,” said AHIMA CEO Lynne Thomas Gordon, MBA, RHIA, CAE, FACHE, FAHIMA. “Each of our award recipients is advancing us toward our goal of making health information available where and when it’s needed.”

Distinguished Member Award

Melanie Brodnik, PhD, RHIA, FAHIMA, is the 2013 recipient of AHIMA’s highest honor, the Distinguished Member Award. Her more than four decade career includes advocacy for HIM practice, education, research and professional excellence. Working at The Ohio State University, Dr. Brodnik established one of the first programs that provided a route for advancing the educational career paths of HIM professionals, leading the designing of the HIM professional curriculum models at the associate, baccalaureate and master’s level. Dr. Brodnik, who is a past president of AHIMA, was honored with the Champion Award in 2006 and the Legacy Award in 2010.

Champion Advocacy and Public Policy Award

Heather Shankland, MBA, RHIA, was honored with the Champion Advocacy and Public Policy Award, which recognizes those whose efforts have advanced AHIMA’s capacity to achieve its mission and supported HIM through involvement in AHIMA’s advocacy and public policy efforts. Shankland has participated in advocacy on the national, state and local levels, particularly through her work in Illinois Health Information Management Association (ILHIMA) and Central Illinois Health Information Management Association (CIHIMA).

Also honored was HIPAA Collaborative of Wisconsin (HIPAA COW). HIPAA COW provides an important resource for programs, a voice in the national dialogue regarding HIPAA implementation and the ability to collaborate with other states and regions. HIPAA COW has offered scores of sessions on privacy and security, bringing in national leaders to help inform HIM professionals. The group also makes documents available on its website to create a foundation for covered entities to provide consistent practices for patients no matter where they are treated.

Educator Award

Marie T. Conde, MPA, RHIA, CCS, FAHIMA, received the Educator Award for her commitment to preparing the next generation of HIM professionals. She spent more than 24 years serving as program director and instructor for the Health Information Technology program at City College of San Francisco. She has served as a chair, commissioner and program site surveyor for the Commission on Accreditation for Health Informatics and Information Management Education (CAHIIM). She is a previous winner of CHIA’s Professional Achievement Award as well as AHIMA’s Mentor Triumph Award.

Margaret Gallo Kyriakos, PhD, RHIA, also was honored with the Educator Award. Dr. Kyriakos, working with the Illinois Health Information Management Association (ILHIMA), has established a mentoring program for first-year students. She serves on the Panel of Accreditations for the Commission on Accreditation for Health Informatics and Information Management Education (CAHIIM), and has been named a distinguished member of ILHIMA and the Chicago Area Health Information Management Association.

Leadership Award

Pamela L. Lane, MS, RHIA, CPHIMS, is the recipient of AHIMA’s Leadership Award. Lane is the deputy secretary of health information exchange at the California Health and Human Services Agency. Her leadership includes collaboration with the Office of the National Coordinator (ONC) for Health Information Technology, and promoting engagement of ONC with AHIMA to ensure core HIM issues are well represented in the HIE discussion.

Bernice C. Ulrich, RHIA, also was honored with the Leadership Award. Ulrich is the vice president of data services for the Indiana Hospital Association. She led the development of the Comparative Outcome Profile, a program providing benchmarking data for hospitals for clinical quality indicators. She has consistently served as a mentor and advocate for professional development for those working in HIM.

Mentor Award

Terri Frnka, RHIT, is a recipient of the Mentor Award in recognition for her long record of encouraging others to realize their full potential. Within her volunteer work with the Texas Health Information Management Association (TxHIMA), Frnka has dedicated herself to being a mentor and establishing clinical sites for students to work in. She also has actively recruited students to join the local and state HIM associations.

Pamela Haney, MS, RHIA, CCS, CPC-H, also was selected for the Mentor Award. Despite the difficulties of finding coders in rural Maine, Haney set a standard requiring all staff to be credentialed. She identified colleagues and students waiting to take their careers to the next level, and has mentored each one. She also led by example by earning her CCS credential along with the majority of her staff.

Pioneer Award

Lorraine M. Fernandes, RHIA, received the Pioneer Award given to those who have advanced quality data, standards development, patient safety and systems development. She is an international thought leader, author, public speaker and advisor on technology’s role in healthcare transformation. She has educated multidisciplinary groups on HIM issues such as Big Data, HIE, data quality and patient, provider and citizen authentication. Fernandes is AHIMA’s national representative to the International Federation of Health Information Management Associations (IFHIMA), and serves on the board of that organization.

Rising Star Award

Frances DiLorenzo, RHIT, is honored with AHIMA’s Rising Star Award that recognizes individuals that embody the hope for the future of the HIM profession. Having no prior involvement in HIM, DiLorenzo joined the Health Information Technology Department at Burlington County College, NJ. Recognizing her leadership, creativity and passion, she was promoted, and recruited and advised more than 80 students. She continued her own education, graduating with an Associate of Applied Science Degree in Health Information Technology and earned her RHIT credential this spring.

Student Award

Robin Hernandez has received this year’s Student Award which honors a student member with high academic achievement who train in a Commission on Accreditation for Health Informatics and Information Management Education (CAHIIM) accredited or AHIMA-approved coding program. Hernandez is a student at Loma Linda University (Calif.), and has promoted the HIM profession at an outreach program for middle-school students. Her professors note her team-work skills, and high personal and professional integrity.

For more on AHIMA, visit www.ahima.org.

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Organ donors

A kidney for $10,000? Paying donors actually pays off, new study finds

Paying living kidney donors $10,000 to give up their organs would save money over the current system based solely on altruism – even if it only boosts donations by a conservative 5 percent.

That’s according to a new analysis by Canadian researchers that rekindles the ongoing debate about whether it’s practical – and ethical – to offer financial incentives for human body parts.

“We have a problem. We don’t have enough organ donors coming forward,” said Dr. Braden Manns, an associate professor and clinical professor in nephrology at the University of Calgary. He led the new study published Thursday in the Clinical Journal of the American Society of Nephrology.

“We need to figure out a way to solve that problem. We shouldn’t throw out, out of hand, solutions that could increase donations.”

But other kidney experts say that even if it’s cost effective to pay people for organs, the moral issues the practice generates might backfire.

“Sometimes these things have unintended consequences,” said Dr. Stephen Pastan, a board member for the National Kidney Foundation and a transplant surgeon at Emory University in Atlanta. “If we paid $10,000, a lot of altruistic donors would say that it’s just a cash transaction. Donations could go down.”

Right now the question is theoretical. In the U.S., Canada and other countries – except Iran – paying people to donate organs is illegal.

Still, Manns and his team wanted to find out if offering financial incentives would save money over the current system of keeping people on kidney dialysis for years. They compared cost data from a cohort of kidney patients identified in 2004 and followed them for three years.

They determined that paying living kidney donors $10,000 apiece would save about $340 per patient, compared with the ongoing costs of dialysis, and would also provide a modest boost of .11 in quality-adjusted life years, or QALY scores, a measure of the quality and length of life. (The money would come from an independent third-party entity, like the Canadian Blood Services or perhaps through OPTN in the U.S., Manns said.)

Those figures are based on what Manns called a “very conservative” assumption that financial incentives would boost kidney donations by 5 percent. If donations actually rose by 10 percent or 20 percent, the cost savings would jump to $1,640 and $4,030 per patient, respectively.

“It’s a substantial gain for the people who get the individual transplant,” said Manns, and a system-wide gain when multiplied by the thousands of people on kidney transplant waiting lists.

In the U.S., for instance, more than 98,000 people are waiting for kidneys, according to the Organ Procurement and Transplantation Network, or OPTN. Last year, more than 4,500 people in the U.S. died waiting for kidneys. Meanwhile, the number of kidney donors has fallen steadily for the past several years, to 13,040 in 2012, despite the growing need, figures show.

In Canada, the issue is the same: Wait lists of two to three years, and about 30 percent of patients die while waiting, Manns said.

“The obvious question, the elephant in the room is, ‘Why don’t more people donate?’” Manns said.

Read the NBC News article.

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Informatics

Gene editing could lend hope to thousands

It’s hard to see the future of medicine through the scabs, blisters and scars that torment 7-year-old Charlie Knuth as he makes his way haltingly to a checkup at the U of M Amplatz Children’s Hospital.

But the boy from Appleton, Wis., is helping doctors perfect a pioneering intervention called gene editing, a procedure that could lend hope to thousands of people suffering from hundreds of diseases – including epidermolysis bullosa, the disorder that causes Charlie’s skin to shear off and his eyes to blister.

Charlie’s case also illustrates the power of an emerging field called “biomedical and healthcare informatics” that’s beginning to revolutionize every aspect of medicine, from laboratory research to clinical treatments.

The doctors and Ph.D.s helping Charlie – a team that includes scientists at the U, in Massachusetts and in Germany – couldn’t have done their work without mining a massive genomic database that enabled them to interpret millions of bits of data in the boy’s DNA, according to Dr. Jakub Tolar, director of the U’s Stem Cell Institute.

That, in turn, allowed them to cut out a single, defective gene and splice in a correction without damaging side effects.

The procedure, which they described in a recent issue of the journal Molecular Therapy, is part of a larger movement that has medical professionals collaborating with physicists, mathematicians, statisticians, social scientists and computer engineers in an effort to create and mine “Big Data” centers. Much as Google, Facebook and Amazon mine massive amounts of data to discern consumer preferences, these researchers are sifting huge quantities of medical data to diagnose, understand and cure diseases.

The U, Mayo Clinic and several Minnesota businesses are well-positioned to take advantage of the trend. Five years ago, the U launched a special graduate program in Biomedical Informatics and Computational Biology (BICB). Partners include its Twin Cities and Rochester campuses, the Hormel Institute, Mayo, IBM, the National Marrow Donor Program and a brain research center at the Minneapolis Veterans Medical Center. And three years ago the U received a $5.1 million federal grant specifically to train health professionals in informatics.

Read the Minneapolis Star Tribune article.

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