When physicians are ready to promote patient empowerment / engagement, what do we want them to do?

“This question was posed to me by Ann Barber, MD, who I just spoke with. Ann reached out to me because she has been following the work of the group at e-patients.net, and specifically their call to recruit physicians to support the patient empowerment movement. Ann is an internist who specializes in hospital medicine, and has recently relocated to New York.”
Article
Ted Eytan MD, 8 October 2008

More on Ix and Health 2.0…

“After I blogged last week about the Ix role in Health 2.0, it was cross-posted on The Health Care Blog. The post there generated a number of comments representing multiple perspectives.
As is perhaps too common in blogging, I may have gone too quickly and not been clear enough about some of the premises of Ix, particularly with respect to the great importance I place on consumer empowerment and engagement. I also did not provide examples to give a better perspective on what I was describing.”
Article
Josh Seidman, PCHIT Blog, 6 October 2008

Want to Empower Your Patients? Don’t Be Afraid to Challenge Them!

“Hildner spent the early portion of his well-received presentation, titled “Well Doc, What Would YOU Do? Empowering Patients to Make Educated Decisions,” defining shared decision making. Shared decision making works, stated Hildner, because it improves outcomes, improves patient satisfaction with the care experience, and fosters a stronger patient–physician relationship. He offered a variety of alternative definitions for the term (including “relationship-centered decision making”) that stressed the central importance of a strong patient–physician relationship and effective communication (more on that in a minute) in creating an environment that will not only allow patients to understand the options available to them and the possible ramifications of the treatment decisions they make with their physician, but also ensure that physicians understand their patients’ concerns, values, and priorities regarding treatment. Hildner was careful to also discuss what shared decision making is not; it’s not merely informed consent or patient education—it encompasses the entire process of consultation, teaching, recommending, and listening that characterizes effective family medicine.”
Article
Todd Kunkler, HCP Live, 22 September 2008

Who’s Afraid of the Empowered Patient?

“From today’s JAMA:
“…Yet patients can be stingy too—stingy with their respect and their gratitude. For all our hard-earned knowledge and personal sacrifice, don’t we deserve a little reverence? Of course we do. However,whether we deserve it or not is irrelevant because times have changed. Patients are no longer passive and adoring, and our relationship is no longer hierarchical and paternalistic. It is when we see this change as a demotion, rather than as an evolution, that our hackles get raised.
Delia Chiaramonte, JAMA. 2008;300(12):1393-1394.”
Article
Marina, Im-Patient, 24 September 2008

Renal PatientView to attract more users

“Thousands more kidney patients are to be encouraged to use Renal PatientView, a secure online service that gives them password-protected access to test results and information about their diagnosis and treatment.”
Article
e-Health Insider, 24 September 2008

Consumer or Patient?

“The newest edition of Health Affairs includes the story of Michelle Mayer, a patient whose odyssey seems to validate consumer-driven medicine—at least on the surface. But a closer look reveals that Mayer’s tale is no consumerist parable; in fact, it’s a great example of consumer-driven medicine’s shortcomings as a model for health care.”
Article
Niko Karvounis, Health Beat, 22 September 2008

Experience-based Information: The Role of Web-based Patient Networks in Consumer Health Information Services

“The prevalence of Web-based patient networks creates a substantial need for health information professionals to consider the qualities of such patient-mediated communities. By understanding the social and design characteristics of such communities through online patient community ethnography and comparative analysis of Web information evaluation criteria, health information professionals can better understand how to evaluate these information sources and find service integration points.”
Abstract
Susan Scola-Streckenbach, Journal of Consumer Health on the Internet, Volume: 12 Issue: 3, 216 - 236, DOI: 10.1080/15398280802143657

Meeting the Requirements of Project HealthDesign: Comparative Analysis with Respect to Existing and Emerging Clinical Data Standards and Commercial PHR Data Repositories

“Funded by the Robert Wood Johnson Foundation (RWJF), in collaboration with the California HealthCare Foundation, Project HealthDesign is a $5 million national program of PHR systems. Administered by a national program office at the University of Wisconsin-Madison, Project HealthDesign’s goal is to design and test a variety of PHR tools and applications that work together to help people achieve their various and specific health goals in an integrated fashion.
The program is supported by the Foundation’s Pioneer Portfolio, which funds innovative projects that can lead to breakthrough improvements in the future of health and health care.”
Report
Sujansky & Associates, LLC, Project HealthDesign, August 2008

ICT, Self-care, PHR’s, and EHR’s: Healthcare and Web 2.0

“Healthcare systems are undergoing a series of complex transformations. Consumers are demanding better services and information that enables provider transparency and a more personalized service delivery model. This shift in healthcare has already begun, whether or not healthcare delivery organizations are ready to respond or not. We are quickly moving away from the traditional models of medicine and towards a patient-centric model with the intent to deliver more efficient care, whilst simultaneously improving patient outcomes.”
Article
Panteleon, Acumeme, 1 August 2008

Patient 2.0 Empowerment

Abstract
The authors want to show the implication of interactive ICT on patient empowerment, through an overview of some of the key aspects - EHR, telecare and patient networks - all this within the context of recent Health 2.0 developments.
Definitions will be given of both Health 2.0 and Patient 2.0 Empowerment.
Article
Lodewijk Bos, Andy Marsh, Denis Carroll, Sanjeev Gupta, Mike Rees, to be published in the SWWS08 Proceedings, August 2008

AHIP adopts principles on patient-centered medical home

“The board of America’s Health Insurance Plans, the trade group for health insurers, has adopted core principles on the development of a patient-centered medical home, including payment realignments.”
Article
Rebecca Vesely, Modern Healthcare Online, 26 June 2008

Journal of Consumer Health on the Internet

Table of Contents for Volume: 12 Issue: 1

Article: The Refugee Health Information Network: A Source of Multilingual and Multicultural Health Information
Gale A. Dutcher; Page Range: 1 - 12; DOI: 10.1080/15398280802081402
The Refugee Health Information Network is an electronic resource designed to make accessible culturally and linguistically appropriate health and medical information in order to improve health services for refugees and asylees. Much of this information will clearly be of value to immigrants as well. This is also a network designed to facilitate collaboration and sharing among state refugee health coordinators and clinics providing services to refugee and immigrant communities.

Article: My HealtheVet: Fighting for Health with Information
Janet Schneider; Page Range: 13 - 21; DOI: 10.1080/15398280802081410
Patients are increasingly demanding access to health information and their own medical records. The Veterans Health Administration (VHA) recognized this desire in its patient population, and developed My HealtheVet as a national Web site that serves as an authoritative portal for veterans and their families to find health and benefits information, as well as refill VA-issued prescriptions, log personal medical information, and enter daily health metrics. The site has logged over 11 million visits since its national debut in November 2003 and has proven its value to veterans.

Article: Transforming Diabetes Self-Management or Not
Catherine M. Boss, Colleen Wolfe, Yen-Hong Kuo; Page Range: 23 - 36; DOI: 10.1080/15398280802081428
Funding from the National Network of Libraries of Medicine (NN/LM) in the fall of 2004 assisted in the establishment of the Health-e Learning Project by the librarians of Meridian Health, a health system in southeastern New Jersey. Health-e Learning’s project goal was to establish a self-sustaining educational initiative to steer older adults toward the reputable medical Web site MedlinePlus and to train them to navigate this site to self-manage a chronic condition. The Health-e Learning Project was not successful in transforming diabetes self-management as originally planned, with only a handful of older adults trained, too small a number to be statistically significant.

Article: Consumer Health Web Sites for Parents of Children with Autism
Robin M. Sabo, Julie M. Lorenzen; Page Range: 37 - 49; DOI: 10.1080/15398280802081436
Many parents of children with autism search the Internet to learn more about the condition. Unfortunately, variability in Web site quality, low literacy levels, and language barriers may prevent them from finding reliable information. To assist parents in locating high quality resources, this article provides an annotated list of Web sites on health aspects of autism. Both a health sciences librarian and a parent of a child with autism present their perspectives and discuss the broader is sue about how parents of children with medical conditions use the Internet.

Article: Food Allergy and Anaphylaxis Network (FAAN)
Donna MacLeod; Page Range: 51 - 56; DOI: 10.1080/15398280802081444
Food Allergy and Anaphylaxis Network (FAAN) provides its Web site to educate, advocate, and make available research information about food allergies to the public. Many helpful features include downloadable forms, brochures, and guidelines; support groups; further medical contact information; and the Kids/Teens Web sites. This resource is reviewed for scientific accuracy by a medical advisory board. There is also a Teen Advisory Group which contributes and reviews the Teen Web site’s content and style.

Quotes from ICMCC Presentations

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Quotes from ICMCC 2008 Keynotes

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Medicine 2.0 Carnival: Web 2.0 technologies and the practice of medicine

“This month’s edition of Medicine 2.0 focuses on connections. You’ll learn how new technologies are empowering patients by connecting them with their own health records, connecting patients and paramedics with doctors, and connecting doctors with each other.”
Article
Sandra Porter, Discovering Biology in a Digital World, 1 June 2009

ICMCC Event Preview 5

On the Wednesday, Prof. Bernd Blobel, in cooperation with the Working Groups “Electronic Health Records” and “Security, Safety and Ethics” of the European Federation for Medical Informatics, organizes the session Personal Health Paradigm Challenging Citizens and Patients.

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ICMCC Event Preview 4

Tuesday June 11, the middle day of the conference, traditionally is the keynote day of the ICMCC Event.

After the opening by the acting Dean of the Westminster Business School, the keynote session in the morning will cover virtually all aspects of patient information; patient empowerment, records, access, information on prescription, ethics.

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Consumers key to healthcare revolution, says Steve Case

“Revolution Health CEO Steve Case predicts that consumers will shake their concerns over the security of electronic health records just as they have with online financial transactions. Patient control of the data is critical to consumer confidence, he says.”
Article
Bernie Monegain, Healthcare IT News, 16 May 2008

Patient Empowerment: More Than Just PHRs and Electronic Health Records

“I was talking with a coworker today about patient empowerment. No, this isn’t unusual given we work for a company that’s providing PHRs and that patient empowerment is on my mind a lot these days as the author of this blog—and a frustrated health care consumer. But today during our discussion, I realized that I’ve been so focused on writing about PHRs and electronic health records that I’m missing a more well-rounded approach to patient empowerment—which includes all the things we can do, as health care consumers, patients, individuals, parents, caretakers, to take control of our overall health and wealth being.”
Article
Patient Empowerment, 15 May 2008

Microsoft`s Patient Plans

“Patients want to see, feel, handle and distribute their health information the way they do their bank records, Microsoft says.
Microsoft’s doing all it can to empower consumers to find, analyze, manage and securely share their own personal health information in the name of greater knowledge and, ultimately, better health, the company says.”
Article
eWeek, 5 May 2008

Developing informatics tools and strategies for consumer-centered health communication

Abstract:
As the emphasis on individuals’ active partnership in healthcare grows, so does the public’s need for effective, comprehensible consumer health resources. Consumer health informatics has the potential to provide frameworks and strategies for designing effective health communication tools that empower users and improve their health decisions. This white paper presents an overview of the consumer health informatics field, discusses promising approaches to supporting health communication, and identifies challenges plus direction for future research and development. The authors’ recommendations emphasize the need for drawing upon communication and social science theories of information behavior, reaching out to consumers via a range of traditional and novel formats, gaining better understanding of the public’s health information needs and developing informatics solutions for tailoring resources to users’ needs and competencies. This paper was written as a scholarly outreach and leadership project by members of AMIA’s Consumer Health Informatics Working Group.”
Article
Alla Keselman, Robert Logan, Catherine Arnott Smith, Gondy Leroy, and Qing Zeng-Treitler, Journal of the American Medical Informatics Association 2008, April 24, 2008 as JAMIA PrePrint; doi:10.1197/jamia.M2744

Patients turn to Internet for medical solutions

“The Internet has produced two types of patients, says Dr Joseph Kosgey, a general practitioner at the Aga Khan Hospital in Nairobi.
“Some of the patients now go to the doctor just for the prescription, since after consulting the Internet they already know what they are suffering from. The other lot of patients after being diagnosed by the doctors go the net to research on the doctor’s findings,” says Dr Kosgei.”
Article
Beatrice Gachenge, Business Daily Africa, 23 April 2008

Architectural Approaches to Health Information Systems for Empowering the Subject of Care

Abstract:
The personal health paradigm puts the citizen in the health services business process center. This enhances the subject of care’s opportunities, rights and duties regarding his/her health status and the process for maintaining and improving it. First, the citizen and his/her direct environment have to become part of the health information systems network. This implies diagnostic and therapeutic processes performed to the subject of care independent of time, location and local resources by closing the gap through appropriate mobile and miniaturized medical devices up to an implantable level. The individualization of care delivery services requires individualized diagnostic and therapeutic means based on bioinformatics and genomics methodologies. As the individual needs of a subject of care are not predictable, the system architecture must adaptively and autonomously, integrating all domains defining eHealth. Second, the architecture must be policy-controlled for empowering the subject of care, offering all privacy and security services needed. Third, embedded in the system architecture, the subject needs the knowledge presented in the right way using the right terminology to enable the intended empowerment.

Bernd BLOBEL, Peter PHAROW
eHealth Competence Center, University of Regensburg Medical Center, Regensburg, Germany

To be published in “Medical and Care Compunetics 5?, IOSPress, 2008.
To be presented at the ICMCC Event 2008.

How Can the German Electronic Health Card Support Patient’s Role in Care Management

Abstract:
All types of advanced communication, collaboration, and cooperation in healthcare require a strong involvement of all addressed parties including health professionals and patients. Modern healthcare aims at involving patients having them take over responsibility for their own health status. Allowing them to take on their changed roles as emancipated partners in advanced care management, health professionals need to be educated and patients need to be empowered. From a security viewpoint, health issues have to be communicated via trusted health networks. To provide communication and cooperation between professionals and patients as well as to guarantee the required level of involvement of patients in shared care management environments, cards are widely used as person identifiers, on the one hand, and as security tokens, on the other. Being introduced as storage media and portable personalized application system, cards enable a patient controlled access to personalized health services as well as proper use and exchange of personal health data for specific purposes such as emergency. Furthermore, cards allow access to the wider electronic patient record via pointers or tickets. Cards can empower patients. The German Electronic Health Card (eGK) shall thus support care management and specific workflow processes e.g. for prescription and disease management. Regardless whether designed as data or pointer card - international standardization is a prerequisite also for national solutions. The more information patients have regarding different procedures and processes in healthcare, the more are they able to play their dedicated role within care management. Cards can and will contribute by allowing patients to get controlled access to administrative and medical data stored either on cards or in networks. Card holders determine who has access to their health information.

Peter PHAROW^a, Bernd BLOBEL^a and Claudia HILDEBRAND^b
a eHealth Competence Center, University of Regensburg Medical Center, Germany
^b Institute for Biological and Medical Imaging / Medis, Helmholtz Zentrum München, German Research Center for Environmental Health, Neuherberg, Germany

To be published in “Medical and Care Compunetics 5?, IOSPress, 2008.
To be presented at the ICMCC Event 2008.

The Implication Of Choices

“I have heard this theory many times, but I was glad to run across an article on it.  The basic point is that too many choices have negative implications on people.  In this article from Health Day News, it discusses a study published in the Journal of Personality and Social Psychology about the effect of multiple choices.”
Article
George Van Antwerp,Patient Centric Healthcare, 18 April 2008

Information Therapy and the Empowered Patient

Sideshow
Aniruddha Malpani, The Patient’s Doctor, 7 April 2008

Telemedicine Endurance - Empowering Care Recipients in Asian Telemedicine Setup

Abstract:
To optimize the medical resources in India and Asia empowering the patients with e-health services in order to justify the multi-specialty healthcare provided to the rural and remote areas is the need of the hour. C-DAC Mohali is working in this direction since 1999 and deployed the technology for the amelioration of the rural Indian population. We bring home the bacon by a broad spectrum of professional quality Telemedicine products and customized solutions that fit within any budget constraint. We’re experts in telemedicine conferencing and can help find the right solution to empower the patient with the essentials tools. Through this paper a description of the results from our Telemedicine projects, with substantiating and quantifiable data is put forth. Indian Telemedicine establishments need periodic evaluation to rationalize the main objective of the technology i.e. patient care, patient satisfaction, and patient opinion – in one word – patient empowerment.

Jagjit Singh BHATIA^a, Sagri SHARMA^b
a Director, Center for Development of Advanced Computing
^b Assistant Engineer, Center for Development of Advanced Computing

To be published in “Medical and Care Compunetics 5″, IOSPress, 2008.
To be presented at the ICMCC Event 2008.

Access and Privacy Rights Using Web Security Standards to Increase Patient Empowerment

Abstract:
Electronic Health Record (EHR) systems are becoming more and more sophisticated and include nowadays numerous applications, which are not only accessed by medical professionals, but also by accounting and administrative personnel. This could represent a problem concerning basic rights such as privacy and confidentiality. The principles, guidelines and recommendations compiled by the OECD protection of privacy and trans-border flow of personal data are described and considered within health information system development. Granting access to an EHR should be dependent upon the owner of the record; the patient: he must be entitled to define who is allowed to access his EHRs, besides the access control scheme each health organization may have implemented. In this way, it’s not only up to health professionals to decide who have access to what, but the patient himself. Implementing such a policy is walking towards patient empowerment which society should encourage and governments should promote. The paper then introduces a technical solution based on web security standards. This would give patients the ability to monitor and control which entities have access to their personal EHRs, thus empowering them with the knowledge of how much of his medical history is known and by whom. It is necessary to create standard data access protocols, mechanisms and policies to protect the privacy rights and furthermore, to enable patients, to automatically track the movement (flow) of their personal data and information in the context of health information systems. This solution must be functional and, above all, user-friendly and the interface should take in consideration some heuristics of usability in order to provide the user with the best tools. The current official standards on confidentiality and privacy in health care, currently being developed within the EU, are explained, in order to achieve a consensual idea of the guidelines that all member states should follow to transfer such principles into national laws. A perspective is given on the state of the art concerning web security standards, which can be used to easily engineer health information systems complying with the patient empowering goals. In conclusion health systems with the characteristics thus described are technically feasible and should be generally implemented and deployed.

Filipa FALCÃO-REIS^a, Altamiro COSTA-PEREIRA^b,c, Manuel E. CORREIA^a
a Computer Science Department, Faculty of Science, University of Porto, Portugal
^b CINTESIS - Center for research in health information Systems and technologies
^c Biostatistics and Medical Informatics Department, Faculty of Medicine, University of Porto, Portugal

To be published in “Medical and Care Compunetics 5″, IOSPress, 2008.
To be presented at the ICMCC Event 2008.

Immunizations: The First Step in a Personal Health Record to Empower Patients

Abstract:
Despite the promise of better health care through information-centric patient empowerment, little progress has been made. The issue is not that the data do not exist in a useable form, nor that technologies are lacking that would enable access to this information. There are two primary challenges standing in the way of patient empowerment: (1) in the private sector there is no proven revenue model for providing this access and (2) in the public sector the standard argument is confidentiality of information. The lack of a priority by either private or public health providers to empower individuals will lead to these initiatives being consumer driven. Access to immunization records through health informatics and supporting compunetics presents an easy-win opportunity to significantly empower individuals with their own health information.
Scientific Technologies Corporation (STC) has been implementing and supporting immunization registries in North America for over fifteen years. As the leading expert in this area, STC has developed a process for achieving successful large-scale access to personal immunization records with minimal investment. As a first step to empower individuals with on-line access to their immunization records, the STC approach leverages the technical frameworks established for health insurance and 3rd party payer environments linking to statewide immunization information systems. The individual is provided access to their records through their insurer’s health portal. This is populated through electronic exports of member immunization records as retrieved from state or provincial registries that contain provider-supplied patient records, allowing individuals to utilize these hosted services or download their provider administered records into their personal health record.
Individuals have the ability to review their immunization and their family immunization histories. They have the ability to know when an immunization is due, where vaccines are available, and which vaccines minimize risks to disease. For the emerging industry of on-line personal health records, a patient’s immunization record will be the single most important factor to demonstrate success for patient empowerment. It will create a roadmap to support the inclusion of other medical information.

Michael L. POPOVICH^a, Jeffery J. ARAMINI^b, Michael GARCIA^a
a Scientific Technologies Corporation, Tucson, USA
^b Scientific Technologies Corporation, Ontario, USA

To be published in “Medical and Care Compunetics 5″, IOSPress, 2008.
To be presented at the ICMCC Event 2008.

The Power of Patient Stories

Two examples of the power of patient stories came across my email and feeds. A government website, the Utah Department of Health, is sponsoring the Story Bank. They are very transparent about their reason for soliciting health stories,

• To meet the request from reporters working on health-related stories who need real people to interview.
• To show the Utah Legislature the importance of health as they prepare Utah’s state budget.
• among others.

Another is a personal blog by a cancer survivor aptly titled, I’m Too Young for This by Matthew Zachary. I love the subtitle: Stupid Cancer, Survivors Rule. With topics like “the sticker shock of chemotherapy” and “The other face of cancer” about the Young Survivors group, this one is worth checking out.

Article
John Sharp, eHealth, 27 March 2008