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MEDICAL AND CARE COMPUNETICS Studies in Health Technology and Informatics This book series was started in 1990 to promote research conducted under the auspices of the EC programmes’ Advanced Informatics in Medicine (AIM) and Biomedical and Health Research (BHR) bioengineering branch A driving aspect of international health informatics is that telecommunication technology, rehabilitative technology, intelligent home technology and many other components are moving together and form one integrated world of information and communication media The complete series has been accepted in Medline Volumes from 2005 onwards are available online Series Editors: Dr J.P Christensen, Prof G de Moor, Prof A Famili, Prof A Hasman, Prof L Hunter, Dr I Iakovidis, Dr Z Kolitsi, Mr O Le Dour, Dr A Lymberis, Prof P.F Niederer, Prof A Pedotti, Prof O Rienhoff, Prof F.H Roger France, Dr N Rossing, Prof N Saranummi, Dr E.R Siegel, Dr P Wilson, Prof E.J.S Hovenga, Prof M.A Musen and Prof J Mantas Volume 121 Recently published in this series Vol 120 V Hernández, I Blanquer, T Solomonides, V Breton and Y Legré (Eds.), Challenges and Opportunities of HealthGrids – Proceedings of Healthgrid 2006 Vol 119 J.D Westwood, R.S Haluck, H.M Hoffman, G.T Mogel, R Phillips, R.A Robb and K.G Vosburgh (Eds.), Medicine Meets Virtual Reality 14 – Accelerating Change in Healthcare: Next Medical Toolkit Vol 118 R.G Bushko (Ed.), Future of Intelligent and Extelligent Health Environment Vol 117 C.D Nugent, P.J McCullagh, E.T McAdams and A Lymberis (Eds.), Personalised Health Management Systems – The Integration of Innovative Sensing, Textile, Information and Communication Technologies Vol 116 R Engelbrecht, A Geissbuhler, C Lovis and G Mihalas (Eds.), Connecting Medical Informatics and Bio-Informatics – Proceedings of MIE2005 Vol 115 N Saranummi, D Piggott, D.G Katehakis, M Tsiknakis and K Bernstein (Eds.), Regional Health Economies and ICT Services Vol 114 L Bos, S Laxminarayan and A Marsh (Eds.), Medical and Care Compunetics Vol 113 J.S Suri, C Yuan, D.L Wilson and S Laxminarayan (Eds.), Plaque Imaging: Pixel to Molecular Level Vol 112 T Solomonides, R McClatchey, V Breton, Y Legré and S Nørager (Eds.), From Grid to Healthgrid Vol 111 J.D Westwood, R.S Haluck, H.M Hoffman, G.T Mogel, R Phillips, R.A Robb and K.G Vosburgh (Eds.), Medicine Meets Virtual Reality 13 ISSN 0926-9630 Medical and Care Compunetics Edited by Lodewijk Bos President ICMCC Laura Roa Escuela Superior de Ingeniería, University of Seville, Spain Kanagasingam Yogesan Centre of Excellence in e-Medicine Lions Eye Institute, Australia Brian O’Connell Department of Computer Science, Central Connecticut State University, USA Andy Marsh VMW Solutions, UK and Bernd Blobel eHealth Competence Center, University of Regensburg Medical Center, Germany Amsterdam • Berlin • Oxford • Tokyo ã Washington, DC â 2006 The authors All rights reserved No part of this book may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without prior written permission from the publisher ISBN 1-58603-620-3 Library of Congress Control Number: 2006925767 Publisher IOS Press Nieuwe Hemweg 6B 1013 BG Amsterdam Netherlands fax: +31 20 687 0019 e-mail: order@iospress.nl Distributor in the UK and Ireland Gazelle Books Services Ltd White Cross Mills Hightown Lancaster LA1 4XS United Kingdom fax: +44 1524 63232 e-mail: sales@gazellebooks.co.uk Distributor in the USA and Canada IOS Press, Inc 4502 Rachael Manor Drive Fairfax, VA 22032 USA fax: +1 703 323 3668 e-mail: iosbooks@iospress.com LEGAL NOTICE The publisher is not responsible for the use which might be made of the following information PRINTED IN THE NETHERLANDS v This page intentionally left blank vii Medical and Care Compunetics L Bos et al (Eds.) IOS Press, 2006 © 2006 The authors All rights reserved Preface This book accompanies the third annual ICMCC Event In the 12 months since our previous conference we established the goals of the ICMCC Foundation To become the leading source for citizen/patient-related information using the latest medical and care compunetics is the first of these goals ICMCC has been one of the first organizations recognizing the possible thread to patient safety of the information available on the internet ICMCC also recognizes the problems of professionals to find information on the latest developments in medical and care compunetics in a structured way These two aspects form the basis for becoming the leading Knowledge Centre on medicine and care To realize this goal our third annual event covers aspects concerning: • • • Information supply to patient and professional Electronic health records, its standards, its social implications New developments in medical & care compunetics Our third goal is to serve as the central meeting place for exchanging information on all aspects related to medical and care compunetics and for all those concerned We are therefore pleased to be a platform once again for a number of European Commission (IST) funded projects And we are proud to be the platform for the EFMI (European Federation for Medical Informatics) Working Groups “Electronic Health Records”, “Security, Safety and Ethics” and “Cards” and we would like to thank Dr Bernd Blobel and Dr Peter Pharow for their work to organise this session On September 29, 2005 our co-founder Prof Swamy Laxminarayan passed away We will be forever in his debt for his believe in our organisation and goals and his relentless support To honour the memory of one of the greatest minds in biomedicine and biotechnology of the twentieth century ICMCC will this year initiate an annual Swamy Laxminarayan lecture On behalf of the ICMCC Foundation board we wish to thank the IFMBE and the WABT-ICET-UNESCO for accepting us as members and for their support for this conference We are equally grateful for the endorsement by the IEEE-SSIT Finally we would like to thank all the authors who have contributed to making the third ICMCC Event into an interesting and challenging conference Lodewijk Bos Laura Roa Brian O’Connell Kanagasingam Yogesan Andy Marsh Bernd Blobel viii Board Lists Council Board Drs Lodewijk Bos, president, The Netherlands Robert von Hinke Kessler (vice-president, treasurer, secretary general), The Netherlands Denis Carroll, (vice-president), Westminster University, UK Dr Andy Marsh (vice-president), VMWSolutions, UK Prof Brian O’Connell (vice-president), Central Connecticut State University, USA Prof Kanagasingam Yogesan (vice-president), Centre of Excellence in e-Medicine, Australia Organizing Committee Event chair Drs Lodewijk Bos, president of ICMCC, The Netherlands Scientific chair Prof Laura Roa, Biomedical Engineering Program, University of Sevilla, Spain Chair Electronic health records, its standards, its social implications Prof Brian O’Connell, Central Connecticut State University, USA Co-chair: Bryan Manning, UK Chair Developments in Medical & Care Compunetics Prof Kanagasingam Yogesan, Director, Centre of Excellence in e-Medicine, Australia Scientific Advisory Board Prof Dr Emile Aarts, Philips, Technical University Eindhoven, The Netherlands Dr Hamideh Afsarmanesh, Universiteit van Amsterdam, The Netherlands Prof Metin Akay, Dartmouth University, USA Prof Andreas S Anayiotos, University of Alabama at Birmingham, USA Prof Hamid R Arabnia, PhD, The University of Georgia, USA Dr Rajeev Bali Coventry University, UK Drs Iddo Bante, Centre for Telematics and Information Technology (CTIT)/ Technology Circle Twente (TKT), The Netherlands PD Dr Bernd Blobel, Institute of Biometry and Medical Informatics, Universität Magdeburg, Germany Dr Charles Boucher, University Medical Center Utrecht, The Netherlands Prof Peter Brett, Aston University, Birmingham, UK Dr Jimmy Chan Tak-shing, Alice Ho Miu Ling Nethersole Hospital, Hong Kong, China ix Juan Carlos Chia, Proventis, UK Dr Thierry Chaussalet, University of Westminster, London, UK Dr Malcolm Clarke, Brunel University, UK Dr Ir Adrie Dumay, TNO, The Netherlands Ad Emmen, Genias Benelux, The Netherlands Prof Ken Foster, University of Pennsylvania, USA Dr Walter Greenleaf, Greenleaf Med Group, USA Prof Dr Dr h.c Helmut Hutten, University of Technology Graz, Austria Bob Ireland, Kowa Research Europe, UK Prof Robert Istepanian, Kingston University, UK Prof Dr Chris Johnson, SCI, University of Utah, USA Prof Ida Jovanovic, Children’s Hospital of Belgrade, Serbia and Montenegro Prof Zoran Jovanovic, University of Belgrade, Serbia and Montenegro Donald W Kemper, Healthwise, USA Makoto Kikuchi, National Defense Medical College, Japan Prof Dr Luis G Kun, National Defense University, USA Prof Dr Michael Lightner, University of Colorado Boulder, President IEEE, USA Prof DrSc Ratko Magjarevic, University of Zagreb, Croatia Prof Dr Joachim Nagel, University of Stuttgart, President IFMBE, Germany Prof Raouf Naguib, Coventry University, UK; University of Carleton, Canada Ron Oberleitner, TalkAutism, e-MERGE Medical Marketing, USA Prof Marimuthu Palaniswami, University of Melbourne Parkville, Australia Prof Dr Neill Piland, Idaho State University, USA Michael L Popovich MS SE, STC, Tucson, USA Prof Dr Ir Hans Reiber, Leiden University Medical Center, The Netherlands Dr George Roussos, SCSIS, Univ of London, UK Sandip K Roy, PhD, Novartis Pharmaceuticals, USA Prof Dr-Ing Giorgos Sakas, Fraunhofer IGD, Germany Clyde Saldanha, JITH, UK Prof Dr Niilo Saranummi, VTT Information Technologies, Past-President EAMBES, Finland Prof Corey Schou, Idaho State University, USA Anna Siromoney PhD, Womens Christian College, India Prof Dr Peter Sloot, Universiteit van Amsterdam, The Netherlands Prof Dr Jasjit Suri, Senior Director, R & D., Fischer Imaging Corporation, Denver, USA Basel Solaiman, INSERM-ENST, France Prof Mihai Tarata, University of Medicine and Pharmacy of Craiova, Romania Dr Joseph Tritto, World Academy of Biomedical Technologies, UNESCO, France Prof Dr Bertie Zwetsloot-Schonk, Leiden University Medical Center, The Netherlands This page intentionally left blank This page intentionally left blank Medical and Care Compunetics L Bos et al (Eds.) IOS Press, 2006 © 2006 The authors All rights reserved 373 Information therapy: The strategic role of prescribed information in disease self-management Molly Mettler, MSW1; Donald W Kemper, MSIE, MPH2 Healthwise, Incorporated3 Abstract: Imagine this: evidence-based medical information specifically written for and prescribed to a patient with chronic illness, targeted to that patient’s specific “moment in care” and designed to help that patient manage his or her illness Imagine “information therapy” built into every clinical encounter that a patient has with a physician or other health care service Information therapy is defined as the timely prescription and availability of evidencebased health information to meet individuals’ specific needs and support sound decision making [1] Information therapy is a new disease management tool that provides cost-effective disease management support to a much larger portion of the chronically ill population than is generally reached This paper is a practical presentation of information therapy, its role in predictive modeling and disease self-management, and its potential for improving the outcomes of chronic care The Rising Economic Burden of Chronic Illness The steady and inexorable aging of the world’s population has been likened to an “age wave” that will engulf and forever change the landscape of health care Our lengthening lifespan will bring with it an escalating incidence of chronic disease and disability, and an unbearable burden on the economic ability of nations to respond Currently in the United States, it is estimated that 99 million people have at least one chronic condition, be it arthritis, asthma, depression, diabetes, heart disease or other [2] By 2020, it is estimated that 157 million Americans will have a chronic condition, and 81 million of those people (25% of the population) will suffer from multiple chronic conditions [3] This promises to be very expensive Those with chronic conditions account for 76% of hospital admissions, 88% of all prescriptions filled, and 72% of all physician visits The costs associated with treating the suffering and disability caused by chronic mmettler@healthwise.org, Tel: 208-331-6910, Fax: 208-345-1897 dkemper@healthwise.org, Tel: 208-331-6908, Fax: 208-345-1897 2601 North Bogus Basin Road, Boise, Idaho 83702, U.S.A 374 M Mettler and D.W Kemper / Information Therapy: The Strategic Role diseases account for 78% of total U.S medical care costs, including almost 80% of Medicaid expenditures [4] One chronic illness, arthritis, is of special concern worldwide According to data from the charity “Arthritis Care” on World Arthritis Day in 2002, “At least 103 million Europeans, 100 million Chinese, and 43 million Americans are all living with one of the most under-rated incurable diseases in the world….The pain and disability associated with the disease has far-reaching consequences for families, employers, governments and society generally.” [5] One Response to the Crisis: Involving Patients Directly in Care Private and public health care sectors are painfully aware of the looming crisis in arthritis and other chronic illness care Health care organizations, especially those designed for acute care, are wrestling with the realities of the impending overload of aging patients with multiple chronic conditions “Improving Chronic Illness Care”—a national program of the U.S-based Robert Wood Johnson Foundation—has identified the following problems in the current management of chronic diseases: [6] Rushed practitioners not following established practice guidelines Lack of care coordination Lack of active follow-up to ensure the best outcomes Patients inadequately trained to manage their illnesses One response that is gaining momentum is increasingly involving patients in their own care The “Chronic Care Model” that has been developed by “Improving Chronic Illness Care” places emphasis on “the informed, activated patient” and on “self-management support” to help patients succeed in that role: “When informed patients take an active role in managing their health and providers feel prepared and supported with time and resources, their interaction is likely to be much more productive This interaction leads to better glycemic control for patients with diabetes, fewer emergency room visits for patients with asthma, and reduced symptoms among those with depression In short, it leads to healthier patients, more satisfied providers, and lower costs.” [7] This concept of disease self-management is gaining increasing traction Selfmanagement programs systematically and supportively help train patients to care for themselves by helping participants learn health management skills and develop confidence in their ability to manage their health The Stanford Patient Education Research Center in California has developed a set of chronic disease self-management programs (including one specifically for arthritis.) These programs have demonstrated that costs go down, outcomes improve, and health satisfaction goes up when people with arthritis and other chronic illnesses participate in their own care [8] Clearly, for both quality and economic reasons, chronic disease self-management must be supported The technological advances shown by the Internet and e-health are supporting this movement M Mettler and D.W Kemper / Information Therapy: The Strategic Role 375 The Role of Information in Care For most patients, especially those coping with chronic illness, getting good health care information is as important to their good health as the surgeries, medical tests, and drugs prescribed to them And yet, there is no systematic, thoughtful way of delivering highquality information directly to the patient Consumers and patients have increasingly turned to the Internet for health information Approximately 93 to 109 million Americans have looked for health information online, and for 45 million Americans, the Internet has improved the way they take care of their health [9, 10] The Internet is also an important tool for those with chronic conditions; over 50 million consumers with chronic diseases actively use online health information and services [11] Why are millions of patients turning to the Internet?—because most health care providers and systems are ill-equipped for giving people the health information they need Most clinical encounters are too rushed, and doctor-patient exchanges are too hurried Even if there is time in the clinical encounter to impart important information to the patient, most health care providers still rely on the spoken word to transfer that information As a result, most of what the clinician says is forgotten instantly, and even less is remembered by the patient over time Without ready or easy access to health education or high-quality and targeted information from their providers, patients are left to search for information on the Internet Yet, even when they find good information, it can be so disconnected from their professional care that it often disrupts more than helps the clinical process The harrowing story of “Patricia”, who was diagnosed at age 48 with scleroderma, describes a patient experience troubled by no timely information from the provider: “I was told, over the phone, by the rheumatologist I had met once, that I had CREST, a subset of scleroderma The doctor assured me that it was a “much better version” of scleroderma and I'm being diagnosed at an older age, so don't panic and I'm going on vacation, see you in a month She may have told me a little more, but I was so panicked (despite her blithe order) by the news that I didn't hear it Scleroderma was a strange, rare disease of which I had only a vague TV movie idea of, so, since I was at work when I spoke to the doctor, I immediately went on the Internet Within half an hour I was sobbing and getting ready to suffer deeply for a short period and then die I went to several sites, but I was unable to distinguish one piece of information from another Since I had no doctor to talk to, I could not discriminate and of course, assumed the worst I needed information when first getting the diagnosis I had no ability to discriminate the usefulness of one sort over another, especially given my emotional state on receiving the news Information, in a package that I could consume both in first panic and then with more reflection, would have been incredibly useful Instead, when I described my reaction to both the news and the way the news was delivered and then to the overload of information, all I got from doctors was, “Don't go on the Internet!” I know why they say that, but they’re wrong We need information, and we're going to go on the Internet no matter what they say, so we might as well go to the accurate places I understand the doctors’ frustration with misinformation, but they left me with no choice Who wouldn't go on the Internet, given the diagnosis of a rare disease and nothing else? The days 376 M Mettler and D.W Kemper / Information Therapy: The Strategic Role of passive patients are over And support groups are helpful, but limited, as well We need both the science and the support of people going through the same thing.” [12] Prescribed Information: A Key Resource for the Patient Patients like Patricia should not have to be either heroic or lucky to get the information they need to better manage their care And they should not have to force their clinicians to accept the information they find With an information therapy program installed at her doctor’s clinic, Patricia could have received, on paper, by phone, online or all three, the information she needed to allay her fears and give her guidance on what next steps she could take Information therapy is the timely prescription and availability of evidence-based health information to meet individuals’ specific needs and support sound decision making [13] With information therapy, Patricia’s post-diagnosis information prescription could include a description of the illness, the pros and cons of various treatment options, selfmanagement guidelines, and access to community-based and online resources such as support groups For rare disorders like scleroderma, to everyday health concerns like lowering cholesterol, targeted information prescriptions can help meet the needs of the patient How is information therapy different from the patient education that nurses and physicians have always done? Information therapy serves the same purpose but differs in technology and effectiveness Until now, we’ve used “mouth to ear” to get information to patients The clinician speaks and the patient listens—but little is remembered by the time the patient gets home Now, technology allows us to deliver personalized, targeted, documented information to patients electronically—in a way that better supports selfmanagement and shared decision making Right Information, Right Person, Right Time Information therapy, simply stated, is getting the right information to the right person at the right time: 5.1 The right information For medical information to be considered therapeutic, it must meet a set of rigorous criteria that assures its quality and its relevance to the patient’s moment in care Quality information that is therapeutic for the patient must be: Decision-focused If information does not help a person make a better a decision or achieve a needed behavior change, it doesn’t have therapeutic value M Mettler and D.W Kemper / Information Therapy: The Strategic Role 377 Evidence-based Prescribed information much be based on a complete assessment of the best medical research on the specific topic or question involved Reviewed by experts To be “prescription-strength,” each piece of information therapy content must be reviewed by medical specialists with expertise in that specific topic Referenced Prescribed content should be clearly referenced regarding both the source of the evidence on which it is based and the credentials of the medical specialists who have reviewed it Up-to-date Content used in information prescriptions should be periodically reviewed with the dates of the last review and update clearly indicated Free from commercial bias Content for information therapy should not be developed or influenced by organizations or individuals who would receive benefits from the sale of any drug, product, or services described in the content User-friendly Information prescriptions must be understandable by the person to whom it is prescribed 5.2 The right person Information prescriptions are written specifically for a specific patient and/or the caregivers directly involved in making a health decision or changing a specific health behavior This may be the patient alone or may include the patient’s spouse or family member, a close friend, or any other invited advocate Each health care professional on the provider team may also be a “right person.” The right person concept also means that the information is tailored to the special needs and learning style of the patient Tailored messaging addresses the patient’s individual motivations, needs, personal resources, and barriers for change Tailored messaging has been shown to increase motivational effectiveness, promote and support behavioral change, and improve medical outcomes [14] 5.3 The right time The right time is “just in time” to make a health decision Presented too early, the information may go unused and be forgotten Presented after the decision is made, it is usually too late For maximum effectiveness, the information must be presented during the time all options are being considered The right time can also mean in a time sequence so that complex information can be presented a little at a time, with each new piece of information built on top of a foundation of previous information prescriptions Interactive assessments can help determine when to move to the next step of the sequence Timing is usually determined by a combination of human factors and “information triggers.” How it Works: Information Therapy has Three Components “Information triggers” predict the patient’s “moment in care” 378 M Mettler and D.W Kemper / Information Therapy: The Strategic Role The patient’s moment in care defines the questions that they likely have and the decisions they are likely facing as well as the information and support most likely to help The “information prescription” delivers the identified information within a message targeted and tailored to the individual 6.1 Information Triggers Information triggers are the data elements that allow a system to predict an individual’s moment in care In the United States, patient data most often comes in the form of standardized codes, such as: International Classification of Diseases (ICD-9) codes: the ICD-9 classification system arranges diseases and injuries into groups according to established criteria with separate classification for pediatric and adult levels These codes help identify a diagnosis, cause of injury, or intervention Current Procedural Terminology (CPT®) codes: The American Medical Association’s CPT system is the code or language the health care industry uses to communicate clinical service information for administrative and financial purposes National Drug Codes (NDC): Every drug is assigned a unique number that identifies the labeler/vendor; product including the specific strength, dosage form, and formulation for a particular firm; and trade package size NDCs are used by retail pharmacy chains and hospitals for purchasing drugs and maintaining inventory control There are other information triggers, as well Hospital and medical device codes, dates of discharge, admission, length of stay, or findings from either nurse or self-administered assessments can also be used to trigger information specific to an individual’s moment in care Because these information triggers are already collected in standard medical transactions, they can be used to identify, categorize, and describe the diagnosis, treatments, and characteristics of a specific patient 6.2 Moments in Care ICD-9, CPT, and NDC codes can also predict the patient’s “moment in care”—any specific and identifiable point in the diagnosis or treatment of a condition Predicting the patient’s current moment in care is critical to the success of an information therapy application Even within the same diagnosis, patients who are at different stages of diagnosis and treatment have vastly differing information needs For example, a person just diagnosed with osteoarthritis has different questions, decisions to make, and information needs than someone who has lived with arthritis for decades Likewise, someone whose condition is stable has different needs than one who is currently experiencing a setback or relapse and whose symptoms are poorly controlled For each specific moment in care, there is a set of questions and concerns that most patients and their caregivers have and a set of both clinical and non-clinical decisions that M Mettler and D.W Kemper / Information Therapy: The Strategic Role 379 they might be facing For the patient newly diagnosed with osteoarthritis a likely set of questions includes: What medications will work best for me, and what risks they bring? What’s the course of the illness? What lifestyle changes should I make first, and how I stick with them? Information Prescriptions These questions and concerns can be addressed through information prescriptions, which convey evidence-based medical information useful to patients and caregivers As information therapy becomes more sophisticated, the information prescription will be further tailored to match the learning style and readiness for change of the individual patient From trigger to moment in care and then to a specific information prescription, the result is that patients and caregivers receive a targeted information prescription as an integrated part of their health care experience Figure 1: An Information Therapy prescription delivered electronically 380 M Mettler and D.W Kemper / Information Therapy: The Strategic Role Adding Information Therapy onto Existing Technology Information therapy will become a mainstream part of medical practice only when it can be delivered without disruption to the clinical workflow If physicians had the time to look up and deliver good information to every patient and support ongoing behavior change, they would probably be doing so already They don’t have time, so if it is not easy, they just won’t it Fortunately, information therapy technology can be built on top of other business-critical technology infrastructures, such as scheduling and billing, which the clinic or health plan most likely already has in place By linking information therapy applications to other pre-existing information systems, health care organizations can implement information therapy at a low cost Linking information therapy applications to e-prescribing, electronic health record systems (EHR) and electronic order entry (EOE) systems is particularly compelling And for those systems that have a Web site and patient portal, it can also take advantage of patient-portal technology The Economic Case for Information Therapy within Disease Management Until recently, a majority of disease management programs have typically been structured around call center nurses working with patients known to be both chronically ill and in a frail or declining condition Although the labor-intensive nurse intervention is expensive, the savings achieved by better monitoring and better management of these very ill patients has been sufficient to reduce overall costs On the other hand, to assure cost-effectiveness, these nurse-based disease management programs have typically addressed only a small percentage of the chronically ill population Disease management today has changed largely because of two factors, predictive modeling and the trend toward disease self-management Information therapy has a role to play in each Predictive modeling in disease management, is “a process that applies available data to identify persons who have high medical need and are 'at risk' for above-average future medical service utilization.” [15] Using sophisticated modeling tools, health care organizations can, with fair accuracy, predict which patients are likely to be high cost patients in the next year and plan interventions accordingly The concept behind predictive modeling is to stratify a population according to the risk of a future outcome but in time for interventions that might prevent that outcome from occurring By focusing on predictably high-cost patients, disease management organizations are able to cost-effectively use their nurse call centers to help a larger percentage of the chronically ill population However, because even good predictive modeling can accurately predict only about fifty percent of high-cost patients, [16], opportunities remain for reaching the other half of this very important population Predictive modeling and the chronic care model discussed earlier can now work together to distinguish between patients who would cost-effectively benefit from intensive call center support and those who might just need informational support and M Mettler and D.W Kemper / Information Therapy: The Strategic Role 381 encouragement to implement their own self-management plans Properly supported, disease self-management can significantly shift the number of people in “controlled” phases of chronic disease who are at risk to slip into the much more expensive to treat “uncontrolled” phases of the diseases Information therapy is an effective tool for reaching out to 100% of the chronically ill population with self-management support Using current claims data or EMR entries, the same technology that predicts who is likely to be hospitalized for congestive heart failure over the next 12 months can just as easily predict who will be considering a hip replacement or back surgery in the next 30 days For hundreds of such predictions, information therapy could then prescribe the right information to the right person just in time for them to make a more informed decision 10 The Quality Case for Information Therapy within Disease Management Information therapy can provide significant advantages for improving quality in health care delivery 10.1 Building Relationships Information therapy can help a physician or health care facility establish and strengthen good working relationships with patients and their families It increases a sense of access and contact with the physician without adding to the work burden of the physician 10.2 Cost Efficiency Most health care organizations have figured out that it costs far, far less to provide administrative services on-line rather than on the phone or by mail When profit margins are low, the difference between online services can be the difference between a red or a black bottom line The routine use of information prescriptions enables the patient and caregivers to accomplish their business with the provider, facility, or plan using on-line efficiency 10.3 Proficiency The costs of educating patients and caregivers about self-management actions and treatment decision options create a significant challenge for providers and facilities; physicians have little time and patients have many needs While some systems have implemented nurse care counseling programs that respond to patient needs, that resource is also an expensive one, and budgets are invariably tight Targeted information prescriptions, both in advance of and following a clinician visit, and triggered by events recorded in the patient’s medical chart, can improve communication and help clinicians successfully stick to their schedules 382 M Mettler and D.W Kemper / Information Therapy: The Strategic Role 10.4 Patient Safety Medical errors are all too common The complexity of patient medical conditions, combined with staffing shortages, staffing turnover, and communication challenges with patients and families, creates an environment that is prone to error Information prescriptions regarding medication dosages, contraindications, and possible side effects to patients and caregivers can help to prevent medication errors or catch them early before they inflict harm 10.5 Assuring high-quality medical care and patient medical decisions By far, the greatest potential value of information therapy for chronic disease management comes in the improved health outcomes obtained through improved decision making and self-management Shared decision-making, grounded in evidence-based medical information, can better align the needs of the patient and caregiver with the treatment plan 11 Information is Care The key and strategic resource for delivering these improved outcomes for each patient is information: evidence-based information that both supports good medical decision making and patient preference A good information prescription can be as important to care as a medication, a lab test, or a surgical procedure Information can guide a patient’s decisions and change a patient’s behaviors It can increase the patient’s adherence to the treatment plan With good information, patients can self-monitor and, often, self-manage their conditions Without it, they can themselves harm, overlook effective cures, and undermine the best-laid clinical plans The acceptance of this reality will play a vital role in the design of the effective programs for disease management and long term care Integrating information therapy programs within disease management systems can help individual patients and their caregivers optimize patient independence and medical quality while avoiding the costs associated with inappropriate care, medical errors, and decision making outside of the patient’s best interests Good medical information isn’t just “about” medical care—it is an essential part of medical care Care delivered without it is incomplete References [1] [2] [3] [4] Kemper DW, Mettler M Information Therapy: Prescribed Information as a Reimbursable Medical Service Boise: Healthwise, Incorporated; 2002 Improving Chronic Illness Care (homepage on the Internet) Princeton: The Robert Wood Johnson Foundation; c2004 (cited 2004 Sept 10) Available from: http://www.improvingchroniccare.org/change/index.html Faulkner L Disease Management: The New Tool for Cost Containment and Quality Care Issue Brief, National Governor’s Association Center for Best Practices 2003 Feb: Ibid M Mettler and D.W Kemper / Information Therapy: The Strategic Role [5] [6] [7] [8] [9] [10] [11] [12] [13] [14] [15] [16] 383 Betterridge N Arthritis: The Under-Estimated Epidemic Press release Arthritis Care 2002 Oct 12 The Chronic Care Model (homepage on the Internet) Improving Chronic Illness Care Princeton: The Robert Wood Johnson Foundation; c2004 (cited 2004 Sept 8) Available from: http://www.improvingchroniccare.org/index.html Ibid Available from: http://www.improvingchroniccare.org/change/model/patient.html Lorig KR, Sobel DS, Stewart AL, et.al Evidence suggesting that a chronic disease self-management program can improve health status while reducing utilization and costs: A randomized trial Med Care 1999, 37(1):5-14 Fox S, Fallows D Internet Health Resources: Health searches and e-mail have become more commonplace, but there is still room for improvement in searches and overall Internet access (report on the Internet) 2003 Jul 16 (cited 2004 Sep 9) Pew Internet and American Life Project Available from: http://www.pewinternet.org/PPF/r/95/report_display.asp Fox S, Rainie L Vital Decisions: How Internet users decide what information to trust when they or their loved ones are sick (report on the Internet) 2002 May (cited 2004 Sep 9) Pew Internet and American Life Project Available from: http://www.pewinternet.org/PPF/r/59/report_display.asp Manhattan Research, LLC 56.3 million U.S adults finding freedom from chronic health conditions online (report on the Internet) 2003 Apr 16 (cited 2004 Sep 10) Available from: http://www.manhattanresearch.com/ePharma%20AIM%20Release%20041603.pdf Mettler, personal communication, also cited in Mettler M, Kemper DW Information therapy: Health education one person at a time Health Promot Pract 2003 Jul;4(3):214-7 Kemper D Mettler M op.cit p.3 Kreuter MW, Strecher VJ, Glassman B One Size Does Not Fit All: The Case for Tailoring Print Materials Ann Behav Med 1999 21 (4): 276-283 Weiner, J (interview) with Carlson B Predictive Modeling: Sharp Lens on Near Future Manag Care Q, 2003 Jul;12 (7):1 Meek, J Predictive Modeling 101: The Nuts and Bolts of Selecting, Implementing and Ensuring a ROI in Predictive Modeling Proceedings of Advanced Strategies for Predictive Modeling; 2004 Jun 21; Boston, Massachusetts This page intentionally left blank 385 Medical and Care Compunetics L Bos et al (Eds.) IOS Press, 2006 © 2006 The authors All rights reserved Author Index Abu Zeineh, T 266 Arochena, H 191 Ayo, C.K 36 Bali, R.K 191, 221 Baskaran, V 191 Bassinder, J 221 Benton, S Bhatia, J.S 22 Biniaris, C 108 Blobel, B vii, 198, 299, 307, 327, 337, 349 Bocchi, L 70, 228 Bos, L vii Cheshire, P 317 Chiarugi, F 108 Conforti, D 108 Costa, P 176 Costanzo, D 108 Costa-Pereira, A 176 Cristaldi, M Cruz-Correia, R 176 de Lusignan, S 86 de Toledo, P 242 Delprato, U di Giacomo, P 70, 228 Donnelly, K 279 Eckhardt, R 126 Ehikioya, S.A 36 El Hayes, K 266 Engelbrecht, R 327 Ferreira, A 176 Fisher, B 162 Fitton, R 162 Fontanelli, R 108 Galarraga, M 242 Gamberger, D 108 Gibbons, M.C 62 Graschew, G 168 Greenlaw, R Guerri, D 108 Harno, K 364 Harrity, C 266 Heinzlreiter, P 168 Hildebrand, C 327 Honkela, T 183 Hovsto, A 327 Ikhu-Omoregbe, N.A 36 Karkaletsis, V 183 Kaufman, J.H 214 Kawecka-Jaszcz, K 108 Kemper, D.W 373 Kopec, D 74, 126 Kostkova, P 86 Kranzlmüller, D 168 Labský, M 183 Leis, A 183 Levy, K 74, 126 Lohi, M 42 Lopez, D.M 337 López-Ostenero, F 183 Madani, K 42 Madge, B 86 Madinabeitia, G 257 Manning, B.R.M 7, 138, 207 Marsh, A vii, 108 Martínez, I 242 Mayer, M.A 183 McCofie, T 74 McKeon Stosuy, M 138 Mettler, M 373 Naguib, R.N.G 191, 221 Nordberg, R 291 Norgall, T 299 O’Connell, B vii Oliveira-Palhares, E 176 Parati, G 108 Perticone, F 108 Pharow, P 198, 299, 307, 327, 349 Poirier, C 162 Poortinga, R 47 Popovich, M.L 151 Prado, M 96 Rakowsky, S 168 Reina, J 96, 257 Ricci, F.L 70, 228 Roa, L.M vii, 96, 257 386 Robinson, J Roelofs, T.A Román, I Ruotsalainen, P Salden, A Salvettis, O Sanyal, I Savastano, M Schlag, P.M Serrano, L Shagas, G Sharma, S Smith, E Stables, D 86 168 257 364 47 108 15 327 168 242 126 22 214 162 Stamatakis, K Stratakis, M Tamang, S Thomeczek, C Tsiknakis, M Valentini, M Vieira-Marques, P Villarroel, D Volkert, J Wallis, M Watkins, T Wheaton, M Yogesan, K 183 108 74, 126 183 108 108 176 183 168 191 151 191 vii ... Ruotsalainen 36 4 xiv Invited Paper Information Therapy: The Strategic Role of Prescribed Information in Disease Self-Management Molly Mettler and Donald W Kemper 37 3 Author Index 38 5 Medical and Care Compunetics. .. (Eds.), Regional Health Economies and ICT Services Vol 114 L Bos, S Laxminarayan and A Marsh (Eds.), Medical and Care Compunetics Vol 1 13 J.S Suri, C Yuan, D.L Wilson and S Laxminarayan (Eds.), Plaque... Diego M Lopez and Bernd Blobel 33 7 Specific Interoperability Problems of Security Infrastructure Services Peter Pharow and Bernd Blobel 34 9 Sharable EHR Systems in Finland Kari Harno and Pekka Ruotsalainen