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Monday, April 21, 2014

Needed: a research agenda and program for clinical informatics

I recently had the opportunity to hear a talk by Philip Bourne, PhD, the new Associate Director for Data Science at the National Institutes of Health (NIH). I have always been impressed with Dr. Bourne's work in bioinformatics, and I welcome the NIH paying attention to data science throughout it new Big Data to Knowledge (BD2K) Program.

Dr. Bourne gave an excellent talk, laying out a vision for how data science will improve health. He also reiterated his view of "Big Data," published recently in Journal of the American Medical Informatics Association (JAMIA), which focused less on the quantity of data and more on clinical, research, and other health-related organizations making maximal use of all of their data assets1. This is in distinction, as noted by another commentary, about a certain vagueness when definitions of Big Data focus on the word "big"2. Dr. Bourne's utilitarian view makes more sense to me, since there are many "small" data issues around clinical data, such as quality, completeness, and provenance, that must be solved before we can trust and apply the output of Big Data systems3.

Nonetheless, what I believe was under-appreciated in Dr. Bourne's talk, which is common among those coming from the bioinformatics world where data is more regular and complete, was the scientific issues underlying the challenges of clinical data. Yes, we are (finally!) entering an era when patient data is increasingly captured in electronic form. But just because clinical data is plentiful does not mean it is good data, and there is no evidence, as is sometimes asserted, that more plentiful quantities of data will overcome some of its quality problems. I certainly agree that clinical trials as we now perform them are small, expensive, and may not have generalizability. But that does not prove that multiple orders of magnitude larger quantities of observational data will be better.

I certainly have enthusiasm for using data in our clinical systems. I believe there will be tremendous opportunities for leveraging the value of data, especially when it is of high quality. We will, for example, be able to validate the results of experimental studies on a much larger scale. We will also be able to find many uses for predictive analytics, such as identifying patients where we can intervene to ward off poor outcomes or find ways to deliver healthcare services more efficiently. There is no end to the possible value of Big Data in healthcare and biomedicine.

But the fruits of more data will not be realized just by accumulating more of it in digital systems. One of the big challenges was eloquently stated by another attendee of the talk, Dr. Justin Starren of Northwestern University, who noted that while data science deals with important problems, it takes place outside of the workflows addressed by clinical informatics. On the front end, data science says very little about data entry, workflow, usability of EHRs, and other factors that have, according to a recent survey by Medical Economics magazine, made EHRs the bane of many clinicians4. On the back end, there are challenges too, such as whether the output of data analytical algorithms can be applied in ways that measurably benefit clinical outcomes5.

These are important as growing criticism emerges from clinicians regarding currently used EHRs. We also know that while a good deal of research shows benefits of IT6, other research raises concerns about its safety7. Clearly we have a ways to go before we solve the end-to-end goal of electronic record-keeping leading to improved health or healthcare delivery.

To this end, we need a research agenda for clinical informatics. The problem is that we do not have a well-funded federal agency devoted to research in this area. The National Library of Medicine (NLM) is an obvious home for such research, especially as many of us have careers that have been propelled by NLM funding. However, many people don't immediately think of a "library" for this kind of work. In addition, the NLM's research budget is small; for example, only 13 research grants were awarded last year. Another government agency that funds this kind of work might be the Agency for Healthcare Research & Quality (AHRQ), which has a rich health information technology (HIT) portfolio. However, as important as AHRQ studies are, they mostly focus on applications of HIT and do not get down to the core scientific issues addressed above. Some of the other institutes of the NIH fund informatics research, but is usually applied in disease-specific ways (e.g., the National Cancer Institute and the National Institute of Diabetes and Digestive and Kidney Diseases. There are other government agencies that funded some general types of informatics research, such as the National Science Foundation (NSF), although NSF eschews disease-specific research.

I recognize we are in an era of tight federal research funding, with few dollars for investing in new programs. I am hopeful that the investments being made in data science will take a broad focus and include investigation into better ways to produce high-quality clinical data as well as optimally use it to improve health, clinical outcomes, and health care delivery. In the long run, however, our health care system really needs a research agenda and program for clinical informatics.

References1. Bourne PE, What Big Data means to me. Journal of the American Medical Informatics Association, 2014. 21: 194-195.
2. Ward JS and Barker A, Undefined by data: a survey of big data definitions. Databases (cs.DB), 2014. http://arxiv.org/abs/1309.5821.
3. Hersh WR, Weiner MG, Embi PJ, Logan JR, Payne PR, Bernstam EV, et al., Caveats for the use of operational electronic health record data in comparative effectiveness research. Medical Care, 2013. 51(Suppl 3): S30-S37.
4. Verdon DR, Physician outcry on EHR functionality, cost will shake the health information technology sector, Medical Economics. February 10, 2014. http://medicaleconomics.modernmedicine.com/medical-economics/news/physician-outcry-ehr-functionality-cost-will-shake-health-information-technol.
5. Amarasingham R, Patel PC, Toto K, Nelson LL, Swanson TS, Moore BJ, et al., Allocating scarce resources in real-time to reduce heart failure readmissions: a prospective, controlled study. BMJ Quality & Safety, 2013. 22: 998-1005.
6. Jones SS, Rudin RS, Perry T, and Shekelle PG, Health information technology: an updated systematic review with a focus on meaningful use. Annals of Internal Medicine, 2014. 160: 48-54.
7. Anonymous, Health IT and Patient Safety: Building Safer Systems for Better Care. 2012, Washington, DC: National Academies Press.

This post by William Hersh, MD, FACP, Professor and Chair, Department of Medical Informatics & Clinical Epidemiology, Oregon Health & Science University, appeared on his blog Informatics Professor, where he posts his thoughts on various topics related to biomedical and health informatics.

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Blog log

Members of the American College of Physicians contribute posts from their own sites to ACP Internistand ACP Hospitalist. Contributors include:

Albert Fuchs, MD
Albert Fuchs, MD, FACP, graduated from the University of California, Los Angeles School of Medicine, where he also did his internal medicine training. Certified by the American Board of Internal Medicine, Dr. Fuchs spent three years as a full-time faculty member at UCLA School of Medicine before opening his private practice in Beverly Hills in 2000.

And Thus, It Begins
Amanda Xi, ACP Medical Student Member, is a first-year medical student at the OUWB School of Medicine, charter class of 2015, in Rochester, Mich., from which she which chronicles her journey through medical training from day 1 of medical school.

Auscultation
Ira S. Nash, MD, FACP, is the senior vice president and executive director of the North Shore-LIJ Medical Group, and a professor of Cardiology and Population Health at Hofstra North Shore-LIJ School of Medicine. He is Board Certified in Internal Medicine and Cardiovascular Diseases and was in the private practice of cardiology before joining the full-time faculty of Massachusetts General Hospital.

Zackary Berger
Zackary Berger, MD, ACP Member, is a primary care doctor and general internist in the Division of General Internal Medicine at Johns Hopkins. His research interests include doctor-patient communication, bioethics, and systematic reviews.

Controversies in Hospital Infection Prevention
Run by three ACP Fellows, this blog ponders vexing issues in infection prevention and control, inside and outside the hospital. Daniel J Diekema, MD, FACP, practices infectious diseases, clinical microbiology, and hospital epidemiology in Iowa City, Iowa, splitting time between seeing patients with infectious diseases, diagnosing infections in the microbiology laboratory, and trying to prevent infections in the hospital. Michael B. Edmond, MD, FACP, is a hospital epidemiologist in Richmond, Va., with a focus on understanding why infections occur in the hospital and ways to prevent these infections, and sees patients in the inpatient and outpatient settings. Eli N. Perencevich, MD, ACP Member, is an infectious disease physician and epidemiologist in Iowa City, Iowa, who studies methods to halt the spread of resistant bacteria in our hospitals (including novel ways to get everyone to wash their hands).

db's Medical Rants
Robert M. Centor, MD, FACP, contributes short essays contemplating medicine and the health care system.

Suneel Dhand, MD, ACP Member
Suneel Dhand, MD, ACP Member, is a practicing physician in Massachusetts. He has published numerous articles in clinical medicine, covering a wide range of specialty areas including; pulmonology, cardiology, endocrinology, hematology, and infectious disease. He has also authored chapters in the prestigious "5-Minute Clinical Consult" medical textbook. His other clinical interests include quality improvement, hospital safety, hospital utilization, and the use of technology in health care.

DrDialogue
Juliet K. Mavromatis, MD, FACP, provides a conversation about health topics for patients and health professionals.

Dr. Mintz' Blog
Matthew Mintz, MD, FACP, has practiced internal medicine for more than a decade and is an Associate Professor of Medicine at an academic medical center on the East Coast. His time is split between teaching medical students and residents, and caring for patients.

Everything Health
Toni Brayer, MD, FACP, blogs about the rapid changes in science, medicine, health and healing in the 21st century.

FutureDocs
Vineet Arora, MD, FACP, is Associate Program Director for the Internal Medicine Residency and Assistant Dean of Scholarship & Discovery at the Pritzker School of Medicine for the University of Chicago. Her education and research focus is on resident duty hours, patient handoffs, medical professionalism, and quality of hospital care. She is also an academic hospitalist.

Glass Hospital
John H. Schumann, MD, FACP, provides transparency on the workings of medical practice and the complexities of hospital care, illuminates the emotional and cognitive aspects of caregiving and decision-making from the perspective of an active primary care physician, and offers behind-the-scenes portraits of hospital sanctums and the people who inhabit them.

Gut Check
Ryan Madanick, MD, ACP Member, is a gastroenterologist at the University of North Carolina School of Medicine, and the Program Director for the GI & Hepatology Fellowship Program. He specializes in diseases of the esophagus, with a strong interest in the diagnosis and treatment of patients who have difficult-to-manage esophageal problems such as refractory GERD, heartburn, and chest pain.

I'm dok
Mike Aref, MD, PhD, FACP, is an academic hospitalist with an interest in basic and clinical science and education, with interests in noninvasive monitoring and diagnostic testing using novel bedside imaging modalities, diagnostic reasoning, medical informatics, new medical education modalities, pre-code/code management, palliative care, patient-physician communication, quality improvement, and quantitative biomedical imaging.

Informatics Professor
William Hersh, MD, FACP, Professor and Chair, Department of Medical Informatics & Clinical Epidemiology, Oregon Health & Science University, posts his thoughts on various topics related to biomedical and health informatics.

David Katz, MD
David L. Katz, MD, MPH, FACP, is an internationally renowned authority on nutrition, weight management, and the prevention of chronic disease, and an internationally recognized leader in integrative medicine and patient-centered care.

Just Oncology
Richard Just, MD, ACP Member, has 36 years in clinical practice of hematology and medical oncology. His blog is a joint publication with Gregg Masters, MPH.

KevinMD
Kevin Pho, MD, ACP Member, offers one of the Web's definitive sites for influential health commentary.

MD Whistleblower
Michael Kirsch, MD, FACP, addresses the joys and challenges of medical practice, including controversies in the doctor-patient relationship, medical ethics and measuring medical quality. When he's not writing, he's performing colonoscopies.

Medical Lessons
Elaine Schattner, MD, FACP, shares her ideas on education, ethics in medicine, health care news and culture. Her views on medicine are informed by her past experiences in caring for patients, as a researcher in cancer immunology, and as a patient who's had breast cancer.

Mired in MedEd
Alexander M. Djuricich, MD, FACP, is the Associate Dean for Continuing Medical Education (CME), and a Program Director in Medicine-Pediatrics at the Indiana University School of Medicine in Indianapolis, where he blogs about medical education.

More Musings
Rob Lamberts, MD, ACP Member, a med-peds and general practice internist, returns with "volume 2" of his personal musings about medicine, life, armadillos and Sasquatch at More Musings (of a Distractible Kind).

Prescriptions
David M. Sack, MD, FACP, practices general gastroenterology at a small community hospital in Connecticut. His blog is a series of musings on medicine, medical care, the health care system and medical ethics, in no particular order.

Reflections of a Grady Doctor
Kimberly Manning, MD, FACP, reflects on the personal side of being a doctor in a community hospital in Atlanta.

The Blog of Paul Sufka
Paul Sufka, MD, ACP Member, is a board certified rheumatologist in St. Paul, Minn. He was a chief resident in internal medicine with the University of Minnesota and then completed his fellowship training in rheumatology in June 2011 at the University of Minnesota Department of Rheumatology. His interests include the use of technology in medicine.

Technology in (Medical) Education
Neil Mehta, MBBS, MS, FACP, is interested in use of technology in education, social media and networking, practice management and evidence-based medicine tools, personal information and knowledge management.

Peter A. Lipson, MD
Peter A. Lipson, MD, ACP Member, is a practicing internist and teaching physician in Southeast Michigan. The blog, which has been around in various forms since 2007, offers musings on the intersection of science, medicine, and culture.

Why is American Health Care So Expensive?
Janice Boughton, MD, FACP, practiced internal medicine for 20 years before adopting a career in hospital and primary care medicine as a locum tenens physician. She lives in Idaho when not traveling.

World's Best Site
Daniel Ginsberg, MD, FACP, is an internal medicine physician who has avidly applied computers to medicine since 1986, when he first wrote medically oriented computer programs. He is in practice in Tacoma, Washington.

Other blogs of note:

American Journal of Medicine
Also known as the Green Journal, the American Journal of Medicine publishes original clinical articles of interest to physicians in internal medicine and its subspecialities, both in academia and community-based practice.

Clinical Correlations
A collaborative medical blog started by Neil Shapiro, MD, ACP Member, associate program director at New York University Medical Center's internal medicine residency program. Faculty, residents and students contribute case studies, mystery quizzes, news, commentary and more.

Interact MD
Michael Benjamin, MD, ACP member, doesn't accept industry money so he can create an independent, clinician-reviewed space on the Internet for physicians to report and comment on the medical news of the day.

PLoS Blog
The Public Library of Science's open access materials include a blog.

White Coat Rants
One of the most popular anonymous blogs written by an emergency room physician.

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