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Showing posts with label Info. Show all posts
Showing posts with label Info. Show all posts

Patient's Rights

Formalized in 1948, the Universal Declaration of Human Rights recognizes “the inherent dignity” and the “equal and unalienable rights of all members of the human family”. And it is on the basis of this concept of the person, and the fundamental dignity and equality of all human beings, that the notion of patient rights was developed. In other words, what is owed to the patient as a human being, by physicians and by the state, took shape in large part thanks to this understanding of the basic rights of the person.
Patients' rights vary in different countries and in different jurisdictions, often depending upon prevailing cultural and social norms. Different models of the patient-physician relationship—which can also represent the citizen-state relationship—have been developed, and these have informed the particular rights to which patients are entitled. In North America and Europe, for instance, there are at least four models which depict this relationship: the paternalistic model, the informative model, the interpretive model, and the deliberative model. Each of these suggests different professional obligations of the physician toward the patient. For instance, in the paternalistic model, the best interests of the patient as judged by the clinical expert are valued above the provision of comprehensive medical information and decision-making power to the patient. The informative model, by contrast, sees the patient as a consumer who is in the best position to judge what is in her own interest, and thus views the doctor as chiefly a provider of information. There continues to be enormous debate about how best to conceive of this relationship, but there is also growing international consensus that all patients have a fundamental right to privacy, to the confidentiality of their medical information, to consent to or to refuse treatment, and to be informed about relevant risk to them of medical procedures.
The Universal Declaration of Human Rights has been instrumental in enshrining the notion of human dignity in international law, providing a legal and moral grounding for improved standards of care on the basis of our basic responsibilities towards each other as members of the “human family”, and giving important guidance on critical social, legal and ethical issues. But there remains a great deal of work to be done to clarify the relationship between human rights and right to health, including patient rights. Recognizing this challenge, the United Nations Commission on Human Rights (UNHCR) has designated a Special Rapporteur to provide it with a report that examines and clarifies the broader relationship between human rights and the right to health. This report has great importance for the World Health Organization, whose mission is to ensure “health for all”. Grounding this mission in a fundamental human right to health would be an important milestone, and a great step forward realizing this goal.

Genomics and patients' rights

Genomics, like any new approach or technology, presents its own challenges in assuring the protection of basic rights. Despite variations in local legislation and administration of patients' rights, it is important in the case of genomics, as with any other medical intervention, that patients receive treatment consistent with the dignity and respect they are owed as human beings. This means providing, at minimum, equitable access to quality medical care, ensuring patients’ privacy and the confidentiality of their medical information, informing patients and obtaining their consent before employing a medical intervention, and providing a safe clinical environment.
Genomics-based research and genetic technologies raise concerns, however, in relation to several of these issues. For instance, ensuring the confidentiality of genetic information, given its bearing on the health of relatives and sometimes of communities, presents a particular challenge, as does communicating genetic risk, which often involves probabilities rather than certainties. Genetic information is often seen as having a peculiar importance, and so can provide fodder for unfair discrimination of individuals and groups who have particular “genetically determined” conditions. Individuals may therefore have reservations about the use of genetic information by third parties and possible harm that could result, including the denial of health or life insurance, opportunities for education and employment, as well as in some cases financial loan eligibility. Because genomic-based research often occurs at the population level—as with genebanks and pharmacogenomics, for instance—obtaining authentic informed consent may be difficult, as it is not always clear what uses genetic material may be put to in the future, in light of unanticipated technological developments. All of this makes it imperative that health care providers and genetic counsellors be carefully trained, in order that they can provide appropriate information, guidance and support to patients and their families. These issues, among other, are addressed in greater detail in the section of this web-site that addresses the ethical, legal and social implications (ELSI) of human genomics.

Education, policy and protecting basic rights

Assuring that the rights of patients are protected requires more than educating policy makers and health providers; it requires educating citizens about what they should expect from their governments and their health care providers—about the kind of treatment and respect they are owed. Citizens, then, can have an important part to play in elevating the standard of care when their own expectations of that care are raised. Some countries have recognized this, and have advanced their knowledge of genomics in public, academic and scientific spheres. Some follow democratic procedures to vote on resolutions pertaining to genomics. This knowledge and active engagement empowers lay individuals to make informed decisions about the future of genomics, both at the personal and at the policy level. Switzerland is the only country that has made a vote on genetic engineering in the future, with nearly two-thirds of its population voting against a referendum to ban genetic engineering. Countries that have not made an active effort to educate and inform the public on the implications of genomics impede the development of policies and legislation that can protect patient rights by ensuring the appropriate development and application of genomic-based tools and genetic interventions. The creation of effective patient protection laws relies on public knowledge of genetic science and its applications, along with an awareness of the ethical, social, and legal issues surrounding genomics.
Raising awareness of genomics and genetic services and technologies among the general public and patient populations can lead to fruitful advancement of genomics for broad health benefits. In the 2002 Genomics and World Health Report, the WHO Advisory Committee on Health Research (ACHR) strongly recommended that Member States implement educational programmes aimed to raise awareness of genetics among the public. Member States are also encouraged to facilitate a two-way dialogue between the public and policy makers in order to guide the future development of ethical and regulatory systems of clinical practice.

In light of the present need for increased awareness of human rights as they relate to health, and to patient rights more particularly, this section provides information on the rights of patients in various countries, including examples of exercised rights. Links to human rights organizations are also provided.

Sources

International / multinational patient rights documents

National documents on patients' rights

Human rights organizations and documents


What is Health Informatics?


Health informatics (also called health care informatics, healthcare informatics, medical informatics or biomedical informatics) is a discipline at the intersection of information science, computer science, and health care. It deals with the resources, devices, and methods required to optimize the acquisition, storage, retrieval, and use of information in health and biomedicine. Health informatics tools include not only computers but also clinical guidelines, formal medical terminologies, and information and communication systems. It is applied to the areas of nursing, clinical care, dentistry, pharmacy, public health and (bio)medical research.

Aspects of the field

  • Architectures for electronic medical records and other health information systems used for billing, scheduling, and research
  • Decision support systems in healthcare, including clinical decision support systems and information workflows
  • Standards (e.g. DICOM, HL7) and integration profiles (e.g. Integrating the Healthcare Enterprise) to facilitate the exchange of information between healthcare information systems - these specifically define the means to exchange data, not the content
  • Controlled medical vocabularies (CMVs) such as the Systematized Nomenclature of Medicine, Clinical Terms (SNOMED CT), MEDCIN, Logical Observation Identifiers Names and Codes (LOINC), OpenGALEN Common Reference Model or the highly complex UMLS - used to allow a standard, accurate exchange of data content between systems and providers
  • Use of hand-held or portable devices to assist providers with data entry/retrieval or medical decision-making, sometimes called mHealth.
  • The international standards on the subject are covered by ICS 35.240.80[1] in which ISO 27799:2008 is one of the core components.[2]
  • Molecular bioinformatics and clinical informatics have converged into the field of translational bioinformatics.

History
Medical informatics began to take off in the US in the 1950s with the rise of computers.

Early names for medical informatics included medical computing, medical computer science, computer medicine, medical electronic data processing, medical automatic data processing, medical information processing, medical information science, medical software engineering, and medical computer technology.

Since the 1970s the coordinating body has been the International Medical Informatics Association (IMIA).

Medical informatics in the United States
The earliest use of computation for medicine was for dental projects in the 1950s at the United States National Bureau of Standards by Robert Ledley.[3]

The next step in the mid 1950s were the development of expert systems such as MYCIN and INTERNIST-I. In 1965, the National Library of Medicine started to use MEDLINE and MEDLARS. At this time, Neil Pappalardo, Curtis Marble, and Robert Greenes developed MUMPS (Massachusetts General Hospital Utility Multi-Programming System) in Octo Barnett's Laboratory of Computer Science [4] at Massachusetts General Hospital in Boston.[5] In the 1970s and 1980s it was the most commonly used programming language for clinical applications. The MUMPS operating system was used to support MUMPS language specifications. As of 2004[update], a descendent of this system is being used in the United States Veterans Affairs hospital system. The VA has the largest enterprise-wide health information system that includes an electronic medical record, known as the Veterans Health Information Systems and Technology Architecture (VistA). A graphical user interface known as the Computerized Patient Record System (CPRS) allows health care providers to review and update a patient’s electronic medical record at any of the VA's over 1,000 health care facilities.

In the 1970s a growing number of commercial vendors began to market practice management and electronic medical records systems. Although many products exist, only a small number of health practitioners use fully featured electronic health care records systems.

Homer R. Warner, one of the fathers of medical informatics,[6] founded the Department of Medical Informatics at the University of Utah in 1968, and the American Medical Informatics Association (AMIA) has an award named after him on application of informatics to medicine.

Current state of health informatics and policy initiatives
This article reads like a review and may need a cleanup. Please help improve this article to make it neutral in tone and meet Wikipedia's quality standards. (August 2009)

Americas
Argentina
Since 1997, the Buenos Aires Biomedical Informatics Group, a nonprofit group, represents the interests of a broad range of clinical and non-clinical professionals working within the Health Informatics sphere. Its purposes are:

  • Promote the implementation of the computer tool in the healthcare activity, scientific research, health administration and in all areas related to health sciences and biomedical research.
  • Support, promote and disseminate content related activities with the management of health information and tools they used to do under the name of Biomedical informatics.
  • Promote cooperation and exchange of actions generated in the field of biomedical informatics, both in the public and private, national and international level.
  • Interact with all scientists, recognized academic stimulating the creation of new instances that have the same goal and be inspired by the same purpose.
  • To promote, organize, sponsor and participate in events and activities for training in computer and information and disseminating developments in this area that might be useful for team members and health related activities.

The Argentinian health system is very heterogeneous, because of that the informatics developments shows an heterogeneous stage. Lot of private Health Care center has develop system, as the German Hospital of Buenos Aires who was one of the first in develop the electronic health records system.

Brazil Main article: Brazilian Society of Health Informatics
The first applications of computers to medicine and healthcare in Brazil started around 1968, with the installation of the first mainframes in public university hospitals, and the use of programmable calculators in scientific research applications. Minicomputers, such as the IBM 1130 were installed in several universities, and the first applications were developed for them, such as the hospital census in the School of Medicine of Ribeirão Preto and patient master files, in the Hospital das Clínicas da Universidade de São Paulo, respectively at the cities of Ribeirão Preto and São Paulo campi of the University of São Paulo. In the 1970s, several Digital Corporation and Hewlett Packard minicomputers were acquired for public and Armed Forces hospitals, and more intensively used for intensive-care unit, cardiology diagnostics, patient monitoring amd other applications. In the early 1980s, with the arrival of cheaper microcomputers, a great upsurge of computer applications in health ensued, and in 1986 the Brazilian Society of Health Informatics was founded, the first Brazilian Congress of Health Informatics was held, and the first Brazilian Journal of Health Informatics was published.

Canada
Health Informatics projects in Canada are implemented provincially, with different provinces creating different systems. A national, federally-funded, not-for-profit organization called Canada Health Infoway was created in 2001 to foster the development and adoption of electronic health records across Canada. As of December 31, 2008 there were 276 EHR projects under way in Canadian hospitals, other health-care facilities, pharmacies and laboratories, with an investment value of $1.5-billion from Canada Health Infoway.[7]

Provincial and territorial programmes include the following:

  • eHealth Ontario was created as an Ontario provincial government agency in September 2008. It has been plagued by delays and its CEO was fired over a multimillion-dollar contracts scandal in 2009.[8]
  • Alberta Netcare was created in 2003 by the Government of Alberta. Today the netCARE portal is used daily by thousands of clinicians. It provides access to demographic data, prescribed/dispensed drugs, known allergies/intolerances, immunizations, laboratory test results, diagnostic imaging reports, the diabetes registry and other medical reports. netCARE interface capabilities are being included in electronic medical record products which are being funded by the provincial government.

United States
In 2004 the U.S. Department of Health and Human Services (HHS) formed the Office of the National Coordinator for Health Information Technology (ONCHIT). The mission of this office is widespread adoption of interoperable electronic health records (EHRs) in the US within 10 years. See quality improvement organizations for more information on federal initiatives in this area.

The Certification Commission for Healthcare Information Technology (CCHIT), a private nonprofit group, was funded in 2005 by the U.S. Department of Health and Human Services to develop a set of standards for electronic health records (EHR) and supporting networks, and certify vendors who meet them. In July, 2006 CCHIT released its first list of 22 certified ambulatory EHR products, in two different announcements.[9]

Europe For more details on this topic, see European Federation for Medical Informatics.
The European Union's Member States are committed to sharing their best practices and experiences to create a European eHealth Area, thereby improving access to and quality health care at the same time as stimulating growth in a promising new industrial sector. The European eHealth Action Plan plays a fundamental role in the European Union's strategy. Work on this initiative involves a collaborative approach among several parts of the Commission services.[10][11] The European Institute for Health Records is involved in the promotion of high quality electronic health record systems in the European Union.[12]

The NHS in England has contracted out to several vendors for a National Medical Informatics system 'NPFIT' that divides the country into five regions and is to be united by a central electronic medical record system nicknamed "the spine".[13] The project, in 2010, is seriously behind schedule and its scope and design are being revised in real time. The degree of computerisation in NHS secondary was quite high before NPfIT and that programme has had the unfortunate effect of largely stalling further development of the installed base.

Almost all general practices in England and Wales are computerised and patients have relatively extensive computerised primary care clinical records. Computerisation is the responsibility of individual practices and there is no single, standardised GP system. Interoperation between primary and secondary care systems is rather primitive.

Scotland has an approach to central connection under way which is more advanced than the English one in some ways. Scotland has the GPASS system whose source code is owned by the State, and controlled and developed by NHS Scotland. It has been provided free to all GPs in Scotland but has developed poorly.[citation needed] Discussion of open sourcing it as a remedy is occurring.

The European Commission's preference, as exemplified in the 5th Framework[14] as well as currently pursued pilot projects,[15] is for Free/Libre and Open Source Software (FLOSS) for healthcare.
[edit] Asia and Oceania

In Asia and Australia-New Zealand, the regional group called the Asia Pacific Association for Medical Informatics (APAMI)[16] was established in 1994 and now consists of more than 15 member regions in the Asia Pacific Region.

Australia
The Australasian College of Health Informatics (ACHI) is the professional association for health informatics in the Asia-Pacific region. It represents the interests of a broad range of clinical and non-clinical professionals working within the health informatics sphere through a commitment to quality, standards and ethical practice.[17] Founded in 2002, ACHI is increasingly valued[18] for its thought leadership, its trusted advisors and national and international experts in Health Informatics. ACHI is an academic institutional member of the International Medical Informatics Association (IMIA)[19] and a full member of the Australian Council of Professions.[20] ACHI is a sponsor of the "e-Journal for Health Informatics",[21] an indexed and peer-reviewed professional journal. ACHI has also supported the "Australian Health Informatics Education Council" (AHIEC) since its founding in 2009.[22]

Although there are a number of health informatics organisations in Australia, the Health Informatics Society of Australia[23] (HISA) is regarded as the major umbrella group and is a member of the International Medical Informatics Association (IMIA). Nursing informaticians were the driving force behind the formation of HISA, which is now a company limited by guarantee of the members. The membership comes from across the informatics spectrum that is from students to corporate affiliates. HISA has a number of branches (Queensland, New South Wales, Victoria and Western Australia) as well as special interest groups such as nursing (NIA), pathology, aged and community care, industry and medical imaging (Conrick, 2006).

China Main article: Health informatics in China

Hong Kong
In Hong Kong a computerized patient record system called the Clinical Management System (CMS) has been developed by the Hospital Authority since 1994. This system has been deployed at all the sites of the Authority (40 hospitals and 120 clinics), and is used by all 30,000 clinical staff on a daily basis, with a daily transaction of up to 2 millions. The comprehensive records of 7 million patients are available on-line in the Electronic Patient Record (ePR), with data integrated from all sites. Since 2004 radiology image viewing has been added to the ePR, with radiography images from any HA site being available as part of the ePR.

The Hong Kong Hospital Authority placed particular attention to the governance of clinical systems development, with input from hundreds of clinicians being incorporated through a structured process. The Health Informatics Section in Hong Kong Hospital Authority[24] has close relationship with Information Technology Department and clinicians to develop healthcare systems for the organization to support the service to all public hospitals and clinics in the region.

The Hong Kong Society of Medical Informatics (HKSMI) was established in 1987 to promote the use of information technology in healthcare. The eHealth Consortium has been formed to bring together clinicians from both the private and public sectors, medical informatics professionals and the IT industry to further promote IT in healthcare in Hong Kong.[25]

India Main article: Indian Association for Medical Informatics

New Zealand
Health Informatics is taught at four New Zealand universities. The most mature and established is the Otago programme which has been offered for over a decade.[26]

Saudi Arabia
The Saudi Association for Health Information (SAHI) was established in 2006[27] to work under direct supervision of King Saud University for Health Sciences to practice public activities, develop theoretical and applicable knowledge, and provide scientific and applicable studies.[28]

Health informatics law. For more details on this topic, see Health law.

Health informatics law deals with evolving and sometimes complex legal principles as they apply to information technology in health-related fields. It addresses the privacy, ethical and operational issues that invariably arise when electronic tools, information and media are used in health care delivery. Health Informatics Law also applies to all matters that involve information technology, health care and the interaction of information. It deals with the circumstances under which data and records are shared with other fields or areas that support and enhance patient care.

Clinical Informatics
Clinical Informatics is concerned with use information in health care by clinicians.[29][30]

Clinical informaticians transform health care by analyzing, designing, implementing, and evaluating information and communication systems that enhance individual and population health outcomes, improve [patient] care, and strengthen the clinician-patient relationship. Clinical informaticians use their knowledge of patient care combined with their understanding of informatics concepts, methods, and health informatics tools to:

  • Assess information and knowledge needs of health care professionals and patients,
  • Characterize, evaluate, and refine clinical processes,
  • Develop, implement, and refine clinical decision support systems, and
  • Llead or participate in the procurement, customization, development, implementation, management, evaluation, and continuous improvement of clinical information systems.

Physicians who are board-certified in clinical informatics collaborate with other health care and information technology professionals to develop health informatics tools which promote patient care that is safe, efficient, effective, timely, patient-centered, and equitable.

Translational bioinformatics
With the completion of the human genome and the recent advent of high throughput sequencing and genome-wise association studies of single nucleotide polymorphisms, the fields of molecular bioinformatics, biostatistiques, statistical genetics and clinical informatics are converging into the emerging field of translational bioinformatics.[31][32][33]

Leading health informatics and medical informatics journals Main article: List of medical and health informatics journals

See also
Related concepts


Standards/frameworks and governance

Technologies
  • eMix
References
  1. "35.240.80: IT applications in health care technology". ISO. ans this file Retrieved 2008-06-15.
  2. Fraser, Ross. "ISO 27799: Security management in health using ISO/IEC 17799". (See this file) . Retrieved 2008-06-15.
  3. Sittig DF, Ash JS, Ledley RS (2006). "The story behind the development of the first whole-body computerized tomography scanner as told by Robert S. Ledley". Journal of the American Medical Informatics Association 13 (5): 465–9. doi:10.1197/jamia.M2127. PMID 16799115.
  4. MGH - Laboratory of Computer Science
  5. Edwin D. Reilly (2003). Milestones in Computer Science and Information Technology. Greenwood Press. pp. 161. ISBN 978-1573565219.
  6. Patton GA, Gardner RM (1999). "Medical informatics education: the University of Utah experience". Journal of the American Medical Informatics Association 6 (6): 457–65. PMID 10579604.
  7. See this file
  8. "Head of eHealth Ontario is fired amid contracts scandal, gets big package". CBC News. 2009-06-07. (See this file) . Retrieved 2009-08-26.
  9. Certification Commission for Healthcare Information Technology (July 18, 2006): CCHIT Announces First Certified Electronic Health Record Products. Retrieved July 26, 2006.
  10. European eHealth Action Plan
  11. European eHealth Action Plan i2010
  12. "Electronic Health Records for Europe". European Space Agency. 2005. (See this file) Retrieved 2009-01-13.
  13. National Programme for IT in the NHS
  14. Cordis FP5web
  15. European Patient Smart Open Services
  16. "Asia Pacific Association of Medical Informatics". (See this file)
  17. "Australasian College of Health Informatics" (See this file) Retrieved 3 May 2010. Australasian College of Health Informatics
  18. University of Sydney Current Developments in Health Informatics
  19. "International Medical Informatics Association - Academic Institutional Members - Australia - Australian College of Health Informatics". 12 August 2009. (See this file) h Retrieved 22 February 2010.
  20. ACHI Memberships ACHI memberships: Professions Australia
  21. eJHI - electronic Journal of Health Informatics (open access journal)
  22. Australian Health Informatics Education Council (AHIEC) AHIEC Auspicing Organisations
  23. "Health Informatics Society of Australia Ltd" (See this file) Retrieved 3 April 2010.
  24. Health Informatics Section in Hong Kong Hospital Authority
  25. eHealth Consortium
  26. Karolyn Kerr; Rowena Cullen, Jan Duke, Alec Holt, Ray Kirk, Peter Komisarczuk, Jim Warren and Shona Wilson (2006). "Health Informatics Capability Development In New Zealand - A Report to the Tertiary Education Commission". (see this file) Retrieved 2009-01-08.
  27. "Medical Pharmaceutical Information Association (MedPharmInfo)". Imia.org. 2008-05-18. see this file. Retrieved 2010-07-29.
  28. [1][dead link]
  29. Gardner RM, Overhage JM, Steen EB, et al. (2009). "Core content for the subspecialty of clinical informatics". Journal of the American Medical Informatics Association 16 (2): 153–7. doi:10.1197/jamia.M3045. PMID 19074296.
  30. Safran C, Shabot MM, Munger BS, et al. (2009). "Program requirements for fellowship education in the subspecialty of clinical informatics". Journal of the American Medical Informatics Association 16 (2): 158–66. doi:10.1197/jamia.M3046. PMID 19074295.
  31. Butte, AJ (2009). "Translational bioinformatics applications in genome medicine.". Genome medicine 1 (6): 64. doi:10.1186/gm64. PMID 19566916.
  32. Kann, M. G. (2009). "Advances in translational bioinformatics: computational approaches for the hunting of disease genes". Briefings in Bioinformatics 11 (1): 96. doi:10.1093/bib/bbp048. PMID 20007728.
  33. Lussier, YA; Butte, AJ; Hunter, L (2010). "Current methodologies for translational bioinformatics" Journal of biomedical informatics 43 (3): 355–7. doi: 10.1016/j.jbi.2010.05.002. PMID 20470899.

External links


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