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Health Information,
Patient Education & Medical Decision Making
- The Big Picture (Model 1):
- Evolving Medical Technologies
- The Evolving Role of Information Technology in the Health Care System
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At the national as well personal levels, we are increasingly concerned about spiraling health care costs.
Information access, processes and technologies (IT) have become central to most propositions as to how health care
costs can be brought under control. Information processes and behaviors involving consumers (patients) are part of
this package. As in other areas of American society, volunteer work is essential in the transmission of health related
information and patient education.
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CROSSING THE QUALITY CHASM: A New Health System for the 21st Century
[Committee on Quality of Health Care in America; INSTITUTE OF MEDICINE.
NATIONAL ACADEMY PRESS, Washington, D.C.
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Ch.7: Using Information Technology [pp.164-180]
"... health care should be supported by systems that are carefully and
consciously designed to produce care that is safe, effective,
patient-centered, timely, efficient, and equitable. This chapter
examines the critical role of information technology (IT) in the design
of those systems.
- Resources on Health Care Information Technology
[Washington State Health Care Authority]
Project Health Design
Project HealthDesign is forging a new vision of personal health records (PHRs) by exploring practical ways to capture
and integrate patient-recorded observations of daily living (ODLs) into clinical care.
American Health Information Community (AHIC)
The American Health Information Community (AHIC) is a federal advisory body, chartered in 2005 to make recommendations
to the Secretary of the U.S. Department of Health and Human Services on how to accelerate the development and adoption
of health information technology. AHIC was formed by the Secretary to help advance efforts to achieve President Bush’s goal
for most Americans to have access to secure electronic health records by 2014.
American Health Information Management Association (AHIMA)
"AHIMA (American Health Information Management Association) is a health information management (HIM) professional association over 63,000 members strong.
Since its founding in 1928, AHIMA has remained committed to quality healthcare through quality information."
American’s Health Insurance Plans:
Innovations in Health Information Technology
www.ahipresearch.org/innovation_series.html
Certification Commission for Healthcare Information Technology (CCHIT)
Founded in 2004, and certifying electronic health records (EHRs) since 2006, the Commission established the first comprehensive,
practical definition of what capabilities were needed in these systems. The certification criteria were developed through a
voluntary, consensus-based process engaging diverse stakeholders,
and the Certification Commission was officially recognized by the federal government as a certifying body.
Commission on Systemic Interoperability
The Commission was charged with developing a strategy to make healthcare information instantly accessible at all times,
by consumers and their healthcare providers. On October 25, 2005, the Commission released its report, Ending the Document Game:
Connecting and Transforming Your Healthcare Through Information Technology, to the United States Congress, the Administration,
and the American public.
Healthcare Information and Management Systems Society (HIMSS)
HIMSS News and Research:
"HIMSS is the source for healthcare IT information. HIMSS’ industry intelligence empowers you to ask the right questions and implement the right solutions."
HL7 United States
Health Level Seven International (HL7) is the global authority on standards for interoperability of health information technology with members in over 55 countries.
SNOMED International
The International Health Terminology Standards Development Organisation is an international not-for-profit organization based in Denmark.
IHTSDO acquires, owns and administers the rights to SNOMED CT and other health terminologies and related standards.
IHTSDO develops and promotes use of SNOMED CT to support safe and effective health information exchange.
SNOMED CT is a clinical terminology and is considered to be the most comprehensive, multilingual healthcare terminology in the world.
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The Public and Doctors Overwhelmingly Agree on Health IT Priorities to Improve Patient Care [January 31, 2011 | Markle Health in a Networked Life]
"The Markle survey found that majorities of the US public and doctors share many of the same hopes for advancing health through information technology (IT). Responding to parallel surveys at a time when significant health care policy changes were being debated and implemented, the public and doctors overwhelmingly agree on key requirements for information technology to increase the quality, safety, and cost-efficiency of care, as well as core privacy protections."
- Electronic Medical Records Videos on YouTube
Shared Medical Records & Online Doctor - Patient Communication
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One important component of these information processes involving the consumer is generally labeled "Record Sharing". Washington State, the University of Washington and
Group Health Cooperative have become leaders in this field. Thus, it is anticipated that more and more Port Ludlow residents will be confronted with "Record Sharing"
types of communication schemes in the near future .... as Group Health members in Kitsap County already are.
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The Third Model: The Informed & Educated Patient
Structural changes in a developing economy, in general, and in health care, in particular tend to lead to more than proportional
increases in the cost of personal, face-to-face, one-on-one services, such as our visits with our physician. Adjustments are made to these increases in personal service
costs in the form of
- increasing charges to the consumer (or to the insurance companies, Medicare etc.),
- decreasing the relative salary levels for many medical
professionals;
- shifting tasks to professionals with less qualifications and lower salaries;
- shifting tasks to the patient or the patient's family, and/or
- increasing the health professional's productivity, e.g., by substituting personal "patient-information time" by digital information processes.
The resulting communication
complexity and need for patient education are now increasingly tackled by computerization, i.e. increasingly, patient information is entered into the computer only once
and the
information for the patient is transmitted by print-outs, the provider's secure Website or by Email. Group Health members are now also encouraged to contact their
doctors by Email which may not only be more convenient for patients but may also save time for the physician (whose income may not depend on frequent
patient visits). It is likely, however, that the most time is saved by an increasing shift of patient education from the doctor's office to the computer.
Patients are not only encouraged but increasingly required to inform themselves on the Internet.
Physicians, whether they are family practitioners or specialists, have hundreds of diseases, conditions and treatments
to keep up with, and each of these relate differently to specific patient situations. Even the most dedicated doctors
cannot follow all promising developments in ongoing medical and pharmaceutical research. Patients have the advantage
that they can concentrate their "research" on one, their own, condition. Yet patients are also vulnerable to succumbing to technological euphoria in the face of
ever more powerful hard- and softwares and the attractions of the Internet. “We must not
confuse the thrill of acquiring or distributing information quickly with the more daunting task of converting it into knowledge and wisdom.”
[www.technorealism.org/]
In a nutshell, there are ways in which consumers
can better inform and educate themselves to compensate for the ever shorter times in the doctor's office and thereby, at the same time, make sure that they fully
understand
what the doctor has told them, ask better questions, make more informed suggestions, get second opinions and put the specific diagnosis and treatment regime into broader contexts. (gk)
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- Informed Healthcare Choices:
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Health Literacy: Accurate, Accessible and Actionable Health Information for AllHealth Literacy Introduction
Learn about Health Literacy,
Health Literacy Resources ,
Understanding Health Literacy,
Understanding Literacy,
Get Training.
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Older Adults: Why Is Health Literacy Important?
"....differences in access to formal education and literacy training, the complexity and technical nature of health information, and the
natural processes of aging may compromise older adults' capacity to use health information and make sense of messages...."
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Developing Materials to Match the Health Literacy Skills of Older Adults
"Do you want to communicate health messages to an older adult audience?
Whether you're developing print or online information, broadcast media or delivering a health presentation, this web site is for you.
This section will provide tools and resources to help you improve your communication with older adults and address health literacy barriers."
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Consumer Health Informatics and Patient Decisionmaking
[Summary, Agency for Healthcare Research & Quality (U.S.DHHS)]
"Although patient health informatics tools can potentially empower
patients to make more informed choices, there is limited empirical
evidence of the outcomes of their use and of their overall value. Few
controlled and comparative studies exist on the effectiveness of tools
intended to inform patients about their medical choices, treatment
alternatives, and the risks and benefits of alternatives according to a
study by Research Triangle Institute for the Agency for Health Care
Policy and Research (AHCPR).... "
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Effective Healthcare Program
["Helping You Make Better Treatment Choices"]
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Guides for Patients and Consumers:
- Research reviews: These comprehensive reports draw on completed scientific studies to make head-to-head comparisons of different health care interventions. They also show where more research is needed.
- Original research reports: These reports are based on clinical research and studies that use health care databases and other scientific resources and approaches to explore practical questions about the effectiveness — or benefits and harms — of treatments.
- Summary guides: These short, plain-language guides — tailored to clinicians, consumers, or policymakers — summarize research reviews’ findings on the benefits and harms of different treatment options. Consumer guides provide useful background on health conditions.
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Registries for Evaluating Patient Outcomes: A User’s Guide: 2nd Edition
[Research Report - Final – Sept. 27, 2 2010]
- Informatics Center:
Knowledge Management (Vanderbilt Univ. Medical Center)
"Knowledge Management (KM) provides high-level data and knowledge
organization skills to optimize the enterprise clinical, research and
educational initiatives. Collaborating with clinicians and researchers,
highly trained information specialists embed best practices in the
organizing, structuring and reuse of the institution's knowledge...."
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Evidence-Based Services - Patient Informatics Consult Service
"The Patient Informatics Consult Service (PICS) is a free information
service provided by Knowledge Management information specialists to all
current Vanderbilt patients and the people who care about them..."
"This service combines the library's Patient Education Collection with
the expertise of the PICS information specialists to retrieve accurate,
relevant, and appropriate information for Vanderbilt patients in
easily-understandable information packets tailored to the individual's
needs about their specific medical condition or disease...."
- Foundation for Informed Medical Decision Making (Boston, MA) [2011]
At The Foundation for Informed Medical Decision Making, we believe that optimal medical decisions require fully informed
patients who participate fully in a shared decision-making process, rather than delegating decisions to their doctors. We believe that one medical answer can never be
right for all people. The decision that will best serve a particular patient often depends on the patient's own preferences and values. And the treatment that is best for
one patient may not be best for another in exactly the same situation. At the Foundation, we consider the opportunity to engage in the process of shared decision making
to be a basic right of every patient.
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Foundation for Informed Medical Decision Making [older, 2006 Website]
The Foundation for Informed Medical Decision Making is ... dedicated to assuring that people understand their choices
and have the information they need to make sound decisions affecting their health and well being...
The Foundation believes that it is the convergence of the two concepts:
medical evidence and patient perspectives that create a truly informed
decision in medical care.
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What is an "Informed Medical Decision"?
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informedmedicaldecisions.org/ Patient Decision Aids
"Decision aids should include evidence-based information about all
viable treatment options, a balanced value-neutral presentation of the
advantages and disadvantages of
each option, and information related to the patient perspective to help
patients clarify their preferences and values about treatment."
"Decision aids can be paper-based or electronic; electronic decision
aids can be delivered through a variety of technology, including
Internet, office-based kiosk, or
recorded media."
- What
is a Decision Aid?
"Patient decision aids are tools that help people become involved in decision making by giving
them information about their options and the possible outcomes of
those options and by encouraging patients to think about and express their personal values.
They are designed to complement, rather than replace, counseling from a health professional."
- PatientPower: Knowledge can be the best edicine of all
"Patient Power® is a service of Patient Power, LLC, based in Seattle and founded by two health communications pioneers, Andrew and Esther Schorr.
They previously founded HealthTalk, a leader in support for people with chronic illnesses and cancer.
Patient Power® is devoted to helping you and your family through knowledge, to get the best medicine and return to good health."
- UpToDate
"UpToDate is an official educational program", offered [also]
to patients:
"To enable shared decision making between clinicians and patients, we
offer a web site where patients can view our patient-level information
for free or subscribe to access physician-level content."
"When your patient is looking for more in-depth information on their disease or condition, refer them to the FREE patient information available on our patient site! Your
patients will be able to search hundreds of patient topics and you'll know that the information they're finding is accurate and trustworthy.
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Informatics-based learning resources for patients and their relatives in recovery.
Moen A, Smørdal O., in: Studies in Health Technol Inform. 2006;122:44-8.
... Development of web-based learning resources allows for exploration of 'just-in-case' and 'just-in-time' strategies to information retrieval and knowledge construction in health and learning trajectories. ..."
- Patient Education Institute
We publish the patient education software X-Plain, implement it in healthcare settings, and collect data to evaluate its effectiveness.
X-Plain is the largest library of interactive multimedia software for patient education. X-Plain uses theories of learning to engage
and deliver patient-specific information, asks patients questions to verify understanding, and documents comprehension, satisfaction, and compliance.
- Certificate (HONcode) of Patient Education Institute
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The Health On the Net Foundation (HON)
"... promotes and guides the deployment of useful and reliable online health information, and its appropriate and efficient use.
Created in 1995, HON is a non-profit, non-governmental organization, accredited to the Economic and Social Council of the United Nations.
For 15 years, HON has focused on the essential question of the provision of health information to citizens, information that respects ethical standards.
To cope with the unprecedented volume of healthcare information available on the Net, the HONcode of conduct offers a multi-stakeholder consensus
on standards to protect citizens from misleading health information...."
- External Personal Health Record (PHR) services: [for safe-keeping & sharing]
- Google Health
The product will continue service through January 1, 2012.
After this date, you will no longer be able to view, enter or edit data stored in Google Health. You will be able to download the data you stored in Google Health, in a number of useful formats, through January 1, 2013.
- Microsoft Health Vault [see also Model I]
The 4th Model: Informed Patients Make their own
Health Choices and share in Medical Decision Making. Video!
In 2007, a new section (.033)was added by the legislature to Chapter 41.05 RCW(Revised Code of Washington) with the intent “to increase the extent to which patients make genuinely informed, preference-based treatment decisions…… by recognition of shared decision making and patient decision aids in the state’s laws on informed consent” (the forms you are given to sign prior to any procedure/ treatment option scheduled by your provider!) Our Education Resource Center has begun compiling reference materials for Patient Decision Aids for high priority health/wellness conditions, e.g., heart, stroke and diabetes, which nicely exemplify this legislation. As used in the RCW 7.70.060 section “Shared Decision Making,” patient decision aid “means a written, audio-visual, or online tool that provides a balanced presentation of the condition and treatment options, benefits, and harms…” (uk)
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