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BT brings benefits of networked IT services to healthcare in Hungary

“UK-based communications solutions provider BT has successfully completed the first phase of a pilot project to improve the exchange of information between hospitals, outpatient clinics and general practitioners in the three least developed regions of Hungary.”
Article
Sam Collins, Healthcare IT News.eu, 8 October 2008

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Patients get veto on access as NHS database expands across England

“NHS staff are to be required to seek patients’ specific consent before reading their electronic medical records under tougher rules to protect confidentiality due to be unveiled today.
The government is pressing ahead with plans to upload the records of 50 million patients in England on to a national database known as the Spine. They will contain a summary of key personal data including allergies and current medications.”
Article
John Carvel, The Guardian, 18 September 2008

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SUS public consultation launched

“NHS Connecting for Health has launched a public consultation on the wider use of patient information held in the Secondary Uses Service that is being created as part of the NHS Care Records Service.
The 12-week consultation run by Tribal Consulting will collect patient views on who should have access to data, what purposes it should be used for apart from direct patient care, who should control access and what consent options there should be for patients.”
Article
e-Health Insider, 17 September 2008

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New Jersey HIE to share patients’ imaging records

“AmeriHealth New Jersey has launched a statewide pilot program that will allow physicians in New Jersey to share patients’ imaging records.
The new initiative, “New Jersey Health Information Exchange (NJHIE),” gives radiologists and other physicians 24-hour electronic access to shared-patient medical imaging records through a secure Web portal.”
Article
Molly Merrill, Healthcare IT News, 8 September 2008

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Internet is key to improving efficiency, quality

“The recently announced merger of Kaleida Health and Erie County Medical Center is an important step in a series of critical changes needed to enhance the quality of care in Western New York. However, we need to take an important physician-driven next step: the implementation of a regionwide medical information exchange connecting physicians, hospitals and insurers.”
Article
Raghu Ram, The Buffalo News Opinion, 5 September 2008

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New Orleans, Katrina, Gustav and Electronic Medical Records

“As we await Hurricane Gustav’s landfall in the US, we’re reminded that there is one thing we can do to improve our health that has nothing to do with what we eat, drink, smoke or how much exercise we get.”
Article
Trisha Torrey, Patient Empowerment Blog, 31 August 2008

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Will PHRs rule the waves or roll out with the tide?

“Rick Schooler, vice president and chief information officer of the Orlando (Fla.) Regional Health System, a seven-hospital network, has high hopes for electronic personal health records. In the future, he believes, portable, patient-controlled, Web-based PHRs will form the basis for regional and national health information networks and give providers access to comprehensive health data on each patient.”
Article
Ken Terry, H&HN, August 2008

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Midwives use new technology to remotely access patient info

“Liverpool Women’s NHS Foundation Trust, a teaching hospital that specializes in care for women and babies, will provide its midwives with a new technology to allow them to securely access, review and update server-based medical records from patient homes.
The new technology, from Toronto-based Nortel, uses a specially-formatted USB key for Windows PCs that automates business network access when inserted and protects information and applications by completely removing them when the USB key is removed.”
Article
Healthcare IT News.EU, 27 August 2008

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Washington communities test health record bank

“Three Washington communities will receive $1.7 million in grants for pilot projects that will test consumer managed health records.”
Article
Molly Merrill, Healthcare IT News, 22 August 2008

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Patient Online Access in the Safety Net: Ted’s Slides

“I am attaching the opening remarks that I made, alongside Veenu Aulakh, at the Patient Online Access in the Safety Net discussion, hosted by the California Healthcare Foundation. It describes the “why?” in the context of my journey of discovery. Click on any image to see full size, and comments are welcome.”
Article
Ted Eytan, 21 August 2008

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New Technology Paves Way for Visually Impaired Internet Users

“IBM previewed a unique Social Accessibility collaboration software, developed by IBM Research, which allows Internet users to improve Web accessibility, particularly for those who are visually impaired.”
Article
eHealthNews.eu, 31 July 2008

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‘Orion-Clinic’, el paso decisivo hacia una región sin papeles

“El Hospital Universitario Doctor Peset y el Centro de Especialidades de Monteolivete, ambos en Valencia, son los centros escogidos por la Consejería de Sanidad de la región para la implantación inicial del programa Orion-Clinic, una aplicación informática que permitirá a los centros valencianos completar la historia clínica electrónica (HCE) con el historial hospitalario del paciente y el acceso a los resultados de todas las pruebas clínicas y exploratorias que se le hayan realizado, una vez que el sistema de información de atención primaria, Abucasis II, está prácticamente generalizado.”
Article (Spanish)
Enrique Mezquita, Diario Medico, 28 July 2008

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HealthVault. RelayHealth partnership boosts patient, doc connection

“Microsoft’s HealthVault and McKesson’s RelayHealth will partner their offerings with the goal of providing patients with greater access to physicians and personal health information and physicians with greater access to data to improve patient care.
HealthVault, which allows patients to store, manage and share their personal health records, will use RelayHealth’s Software-as-a-Service platform to enhance its online patient service and communications.”
Article
Molly Merrill, Healthcare IT News, 25 July 2007

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Leavitt visits southern Alaska, sees how telehealth is increasing access to care

“By using telemedicine and telehealth, patients who live in rural Alaska have better and timely access to critical care through medical specialties, such as cardiology, pediatrics and radiology.”
Article
Molly Merrill, Healthcare IT News, 24 July 2008

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EMIS extends online patient record access

“GP IT system supplier EMIS is extending its online patient record access service to all of its practices.
Latest figures show that GP medical records have so far been viewed 10,853 times with the EMIS Access system, which has been piloted in a small number of practices over the last 18 months.”
Article
e-Health Insider Primary Care, 9 July 2008

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Microsoft and Kaiser Permanente Partner on Health Data Project

“Kaiser Permanente and Microsoft Corp. announced they will pilot health data transfers between Kaiser Permanente’s My Health Manager and the Microsoft HealthVault consumer health platform to expand consumer access to online health information and management tools. My Health Manager’s more than 2 million users have online access to clinical information and health management tools, including e-mail communications with their doctors, online prescription refills, and appointment scheduling. Connecting to the HealthVault platform will allow users to combine personal health information from Kaiser Permanente and a range of health and wellness management applications and devices, such as blood pressure monitors.”
Article
Nurse.com, 7 July 2008

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Work Remains in Creating Access to Online Health Records

“Recent partnerships by two U.S. health insurers with technology giants Microsoft Corp. and Google highlight just how much work must be done to achieve easy access to personal health records.
Recently, Kaiser Permanente said it’s working with Microsoft on a pilot program to give patients more control over their personal health information. It will connect Kaiser’s personal health record, My Health Manager, to Microsoft’s HealthVault, launched last October. Blue Cross Blue Shield of Massachusetts became the first health insurer to partner with Google Health to create PHRs. Google Health, launched in May, allows patients to store and organize their medical records online (BestWire, June 13, 2008).”
Article
Trading Markets, 7 July 2008

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Access to NHS care records may be widened

“The Department of Health is to review the scope of access to the NHS Care Records Service, including possibly of making them available to non-NHS staff.
Under the proposals the DH will look at making the electronic patient records available to a much wider range of groups involved in patient care, including social care bodies, voluntary and private sector organisations and pharmacy, dental and optical services.”
Article
e-Health Insider, 3 July 2008

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The Emergence of the Patient Portal

“It stems to reason that most people would prefer to investigate their health concerns online before visiting a Physician. Studies indicate that these same people report that what they find online influences their treatment decisions. What’s clear that today’s patients are becoming better informed and more web savvy; increasingly seeking services that allow them to take an active role in managing their health.”
Article
Panteleon, Acumeme, 25 June 2008

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Digital records imperil privacy

“Digital technology is all the rage, but there are three reasons patients and doctors may want to avoid online electronic medical records.”
Article
Twila Brase, The Baltimore Sun, 21 June 2008

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ICMCC Event 2008 Kutukdjian speech

The full text of the speech of Prof. Georges Kutukdjian at the ICMCC Event 2008 is available.

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Ethical Aspects of Health Information Supply and Patient Access to e-Health Records

Georges Kutukdjian
Mediator at UNESCO,
Co-Chair of the Ethics Committee, World Academy of Biomedical Technologies (WABT),
Former Secretary-General of the International Bioethics Committee (IBC), UNESCO

Speech at the ICMCC Event 2008
June 10, 2008

I. INTRODUCTION

In the 80’s several international organizations starting putting on their agenda issues pertaining to biology, genetics, medicine and related technologies and to their ethical, legal, social and cultural implications. This was not happening by chance. There were at least four reasons for it. Firstly, there was a sense of the increasing economic weight carried by the research in these areas and by their potential applications. Secondly, the huge expectations that progress in these areas represented in terms of health and well-being for humanity as a whole. Thirdly, the social and cultural changes that would be induced by developments in these fields were perceived as being significant. Fourthly, the public attention that advances in these areas have triggered lead decision-makers to give priority to these issues.

In particular the Council of Europe, in Strasburg and the United Nations Educational, Scientific and Cultural Organization (UNESCO) in Paris were very active. After ten years of preparation, the Council of Europe adopted in 1997 the Convention on Human Rights and Biomedicine (Oviedo Convention) that to date has been ratified by 21 European States. However, it should be noted that it has been ratified neither by France, nor by Germany, nor by the United Kingdom.

Over a period of twelve years, from 1993 to 2005, the United Nations Educational, Scientific and Cultural Organization (UNESCO), with a membership of 193 States, elaborated and adopted unanimously three essential international instruments, which are relevant to the theme selected by the International Council on Medical & Care Compunetics for the 2008 Event, namely Patient Empowerment – The Power of Information.

The Universal Declaration on the Human Genome and Human Rights (UDHGHR) was in 1997 the first universal instrument ever covering the challenges raised by genetic research and their applications in the field of human rights. This Universal declaration was endorsed by the United Nations General Assembly in 1998.

The International Declaration on Human Genetic Data (IDHGD) was adopted in 2003. Its purpose is to ensure respect of human dignity and protection of human rights and fundamental freedoms in the collection, processing, use and storage of human genetic data.

Finally, the Universal Declaration on Bioethics and Human Rights (UDBHR), adopted in 2005, is an all-encompassing legal text that aims at providing a universal framework of principles and procedures to guide States in policy-making and guide the actions of individuals, communities, professional and corporate groups.

The Convention of the Council of Europe is a legally binding instrument. It creates obligations on the side of States and foresees sanctions in cases of infringement of its provisions. The Web site connection to download the European Convention is: http://conventions.coe.int/Treaty/Commun/ListeTraites.asp?MA=9&CM=7&CL=ENG.

The UNESCO Declarations are none binding. However, they represent the consensus of the international community on ethical and legal principles pertaining to medicine, life sciences and associated technologies. As such they do carry some weight since they represent the moral commitment of States to abide by these rules.

The UNESCO texts can be accessed on its Web page through the following link: http://portal.unesco.org/en/ev.php-URL_ID=12027&URL_DO=DO_TOPIC&URL_SECTION=-471.html.

II. OUTLINE

I will limit myself to raising the following three issues:

  • The right of any patient to access his/her medical records;
  • Imparting information to patients, in terms of:
    • the conditions required,
    • the psychological factor in the relation between a patient and the physician and,
    • the cultural sensitivity.
  • Access by third parties to medical records and information.

III. RIGHT OF PATIENTS TO ACCESS THEIR MEDICAL RECORDSM.

Over a few decades, there has been an increasing awareness that individuals should share responsibility in their state of health. This cannot be simply delegated to the medical profession, since our health depend to a certain extend to our life-style, our eating habits, our hygiene, etc. A corollary assumption is that individuals should give their consent to any medical intervention. Giving consent is not only a legal obligation it creates a moral bond between a patient and a health professional. And consent can only be meaningful if it is supported by adequate information. In these circumstances information is indeed power and information can empower patients to exercise their responsibility over their health. One of the effects of the HIV/AIDS pandemic in the industrialized countries has been this reflection on the links between access to medical records, recognition of one’s responsibility and the possibility to seek for more information on the Net.

The right of patients to access to their medical records has been formally recognized only recently. The European Convention, in its Chapter III dealing with “Private life and right to information“, provides that:

“Everyone is entitled to know any information collected about his or her health”
(Article 10.2)

Equally, in its Section dealing with “Access“, the UNESCO Declaration on Human Genetic Data states that:

“No one should be denied access to his or her own genetic data (…)”
(Article 13)

In most of the countries of the world this right is not put into practice neither by physicians nor by hospitals. In fact, the rule is more often to retain information from the patients and even from other consulting doctors.

In France, even hospitals were reluctant to communicate medical records and information not only to patients but to their general practitioners. The French legislation was changed on March 4, 2002 (Act N°2002-303) and on September 8, 2003 by an Executive Order instituting a Charter of Rights and Liberties of the Person Admitted (in a health institution). This Executive Order was further consolidated on 21 May of this year. The Charter devotes article 3 to the Right to Information. Article 1 is on Non-discrimination and article 2 is on the Right to Health Care.

The Charter has been integrated in the Code of Public Health that rules and regulates health practices. Hence,

“every person has access to all information concerning his/her health that professionals or health institutions have elaborated whether for diagnostic, treatment or prevention reasons or have been exchanged between health professionals, with the exception of information that have been collected through third parties that are not health professionals”
(Article L.1111-7)

It is worth noting that that same article states that the information should be provided to the patient within eight days after he/she has filed a request but leaving to the patient forty-eight hours time lag to reflect on his/her request.

Nevertheless, the European Convention, in the same Chapter III considers that:

“the wishes of individuals not to be (so) informed shall be observed”
(same Article 10.2)

The two UNESCO Declarations on the one hand on the human genome and on the other on human genetic data have similar considerations. The first one claims that:

“The right of each individual to decide whether or not to be informed of the results of genetic examination and the resulting consequences should be respected”
(article 5(c) of the UDHGHR)

The second specifies that:

“When human genetic data, human proteomic data or biological samples are collected for scientific research purposes, the information provided at the time of consent should indicate that the person concerned has the right to decide whether or not to be informed of the results”
(article 10 of the IDHGD)

IV. IMPARTING INFORMATION TO PATIENTS

Access to medical records and information is certainly essential, but it is a first step. Because patients rarely understand the content of the records and the purport, scope and implications of the information contained. The four international instruments try to define the conditions under which information should accompany in particular the expression of consent.

A. ConditionsThe European Convention indicates in Chapter II on Consent that the patients concerned:

“(…) shall be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks”
(article 5)

The UNESCO Declaration on bioethics has a similar formulation and talks about “adequate information” (article 6.1). It qualifies it further and states that:

“The information should be adequate (and should be) provided in a comprehensible form (…)”
(article 6.2)

The UNESCO Declaration on human genetic data goes maybe further when it qualifies in Article 6(d) the required information as: “(…) clear, balanced, adequate and appropriate“, adding that it should specify the purpose for which human genetic data are being generated from biological samples, and are used and stored. This information should also indicate, if necessary, risks and consequences associated with the entire process.

The Explanatory Memorandum indicated about this article that oral explanations are often essential to the understanding of the written documents, especially as the medical terminology used is not accessible by all. In the case of illiterate persons, oral explanations are indispensable in order to make sure that the information has been understood.

In this respect, the French law mentioned above specifies that it is the patient or the person exercising parental authority who should request access to the medical records (Article R.1111-1). Furthermore, the doctor who has established the medical records can recommend the presence of a third party, to be designated by the patient, when the information is imparted due to the risks that such knowledge can represent. This is merely a recommendation that the doctor can formulate and if the patient opposes it then he/she either consults the medical records in situ, or requests copies to be handed over or requests the mailing of copies (Article R.1111-2).

The French law makes special provisions in the case of psychiatric patients hospitalized by constraint or hospitalized at the request of a third party. In these cases, the psychiatrist can again recommend that access to medical records by the patient takes place in the presence of a third party designated by the patient, but in case of refusal by the patient, the matter is brought to the attention of a District Commission of Psychiatric Hospitalizations for decision (Article L.1111-7).

B. Psychological factor in the relation between a patient and the physicianThe “who, what, and when” of imparting information is of crucial importance. First, the knowledge that a patient acquires about his/her condition through information is often an asset in a treatment, inasmuch as that information is geared to reinforce his/her “life-drive“. Indeed, secrecy is pathogenic and, instead of liberating the patient, can lock him/her up in a succession of denials. No matter what seems to be the refusal of a patient to know the truth, the physician should not indulge in a play of mirrors of deception, but put the patient on the track of truth. In the case of a predictive diagnosis, information can at times lead a patient to a destructive behaviour known as “self-fulfilling prophecy“. Obviously such enactment bears heavily on the personal history of a patient. But it can to some extend depend on the way a dramatic diagnosis is communicated.

The way information is imparted is almost as important as the content of the information. The diagnosis of an incurable disease can be “death instilling” depending on the way it is imparted. In fact, the way such information is imparted to a patient in terminal stage reveals a lot about the relationship between a physician and death. This is why oncologists and health professionals working in palliative care units should clarify their own relation to death. In fact, the disclosure of dramatic information should be through a process undertaken by the patient, the health professional guiding the patient in the right direction. Hence, the patient would no longer be passive, but become a partner, taking responsibility in the cure or in the preventive treatment. In such a case, the information becomes empowering and the patient musters up the resources to carry on a treatment. Patient associations, in particular psychiatric patient associations have been very vocal on this matter.

Second, the discourse of a patient is no less important than the cure itself. In matters of disease, an essential factor in taming ailments is to demystify symptoms, pains, fears, etc. by expressing them in ones own words. Recently, at a Conference at the French Academy of Medicine, Dr. Didier Sicard, Chairman of the French Consultative Ethics Committee, wondered whether the clinical relation between a patient and a doctor was not disappearing, in particular because doctors had no longer time to listen to what patients had to say. In his opinion, the relation between a physician and the patient that is essential for therapeutic purposes is fading away. In his view, the time factor is only an excuse, because in ten-minutes a patient can express the sore of his/her body to a physician. Let us keep in mind that the oral contact builds the trust in the relation which in turn does indeed have a therapeutic effect.

Third, there is a trend to hand out to patients written information about their condition with no oral explanation. In such circumstances, there is no guarantee that patients have understood the nature of their condition considering the language that is often used. When they are illiterate, the situation is worse, because they will be ashamed to admit it in front of the physician and will rather rely on relatives or members of their community to provide the written information. Surveys show that the problem is that relatives will only give them scanty information, convinced that complete information cannot be understood by an illiterate person.

C. Cultural SensitivityThis leads me to the issue of cultural sensitivity in imparting information. We live in multicultural societies, where words are translated in different languages and used as if they were equivalent to all of us, but in fact they have different meanings and connotations. Illness does not mean the same thing for all of us, nor for that matter life or death. Different cultures have various ways of caring for their sick. What information is disclosed and how it is disclosed is a culturally sensitive issue. It can be considered in the best interest of some patients not to inform them about the probable evolution of their illness, although the next of kin should be. Conversely, patients may wish that information were not transmitted to their families. The role played by various family members can be important in this respect, provided that one has the consent of the concerned patient.

I will give two examples to illustrate the point of cultural sensitivity of information of a dramatic nature. In Japan, the literature on this question indicates that it would be the responsibility of the eldest son to transmit such information, subject to certain conditions and abiding by communication rules which, although they are not written, are expected to be followed.

In the countries of the Middle East, depending on the sex of the patient, it is expected that the eldest son will transmit this information to his father or the eldest daughter to her mother or the wife of the eldest son to her mother-in-law. The role played by the eldest daughter in these societies in family decisions, particularly regarding health care and welfare, is much more important then suspected. In Arabic, the eldest sister is specifically designated by the respectful term of “abla”. Incidentally, this is a common feature of societies stretching from the Middle East to the Caucasus and up to Central Asia.

V. ACCESS BY THIRD PARTIES TO MEDICAL RECORDS AND INFORMATIONThe access by third parties to medical records and information is a central human rights preoccupation. The international instruments mentioned above have provisions about this issue, in particular inasmuch as third parties could use the information in order to discriminate against the individuals concerned or stigmatize them.

“Everyone has the right to respect for private life in relation to information about his or her health”
(Article 10 on “Private life and right to information” of the European Convention)

“Genetic data associated with an identifiable person and stored or processed for purposes of research or any other purpose must be held confidential (…)”
(article 7 of the UNESCO Declaration on the human genome)

“(a) States should endeavour to protect the privacy of individuals and the confidentiality of human genetic data (…).
(b) Human genetic data, (…) should not be disclosed or made accessible to third parties, in particular, employers, insurance companies, educational institutions and the family, except for an important public interest reason in cases restrictively provided for by domestic law consistent with the international law of human rights”
(Article 14 on “Privacy and confidentiality” of the UNESCO Declaration on human genetic data)

VI. CONCLUSION

In conclusion, access and communication through the Net of medical records is a welcome and empowering move subject to three conditions:

  • That it is appropriate to the local setting (at present mainly industrialized countries);
  • That it does not altogether preclude a traditional contact between the patient and the physician and that information is imparted through a face-to-face contact;
  • That the health professionals concerned can ensure the reliability and the quality of the system used to transmit e-health records and ensure the security of the data contained.

This latter condition is also important considering the possible cross-border flows of e-records and their transmission to countries where respect for privacy may not be up to the standards and infringements may not be sanctioned.

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Quotes from ICMCC 2008 Keynotes

Read the rest of this entry »

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Improving access to information can improve health care

“Families across South Dakota and the nation are well aware of the cost of health care today, and it is rightly an issue that should concern leaders in Congress and other levels of government. While partisan politics often overshadows some of the common-sense steps we can take to improve access to affordable, high-quality care, expanding access to effective health care technologies has been one area of agreement.”
Article
Sen. John Thune, Meade County Times-Tribune, 17 June 2008

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US-Verbraucher fordern Online-Zugang zu medizinischen Daten

US Americans want access to their medical records via internet. The same could happen to Germany, once the health card has been introduced.

Article (German)
Gaby Schulemann-Maier, Monsters and Critics, 16 June 2008

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Private Sector Gives ONC Report Qualified Praise

“Health IT advocates in the private sector are giving qualified praise to a federal plan to sharpen the government’s focus on the twin goals of high-quality, cost-efficient, patient-focused health care and of improved population health.”
Article
Neil Versel, Digital HealthCare & Productivity, 10 June 2008

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Access To Electronic Medical Records Significantly Increases Efficiency Of Emergency Care

“A new study led by Paul Sierzenski, MD, RDMS, of Christiana Care Health System, Wilmington, DE, discusses the benefits gained from providing health care workers with immediate access to patient medical records during a mass casualty incident.”
Article
ScienceDaily, 31 May 2008

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Patients’ attitudes to the summary care record and HealthSpace: qualitative study

Objective To document the views of patients and the public towards the summary care record (SCR, a centrally stored medical record drawn from the general practice record) and HealthSpace (a personal health organiser accessible through the internet from which people can view their SCR), with a particular focus on those with low health literacy, potentially stigmatising conditions, or difficulties accessing health care.
Design 103 semistructured individual interviews and seven focus groups.
Setting Three early adopter primary care trusts in England where the SCR and HealthSpace are being piloted. All were in areas of relative socioeconomic deprivation.
Participants Individual participants were recruited from general practice surgeries, walk-in centres, out of hours centres, and accident and emergency departments. Participants in focus groups were recruited through voluntary sector organisations; they comprised advocates of vulnerable groups and advocates of people who speak limited English; people with HIV; users of mental health services; young adults; elderly people; and participants of a drug rehabilitation programme.
Methods Participants were asked if they had received information about the SCR and HealthSpace and about their views on shared electronic records in different circumstances.
Results Most people were not aware of the SCR or HealthSpace and did not recall receiving information about it. They saw both benefits and drawbacks to having an SCR and described a process of weighing the former against the latter when making their personal choice. Key factors influencing this choice included the nature of any illness (especially whether it was likely to lead to emergency care needs); past and present experience of healthcare and government surveillance; the person’s level of engagement and health literacy; and their trust and confidence in the primary healthcare team and the wider NHS. Overall, people with stigmatising illness were more positive about the SCR than people who claimed to speak for “vulnerable groups.” Misconceptions about the SCR were common, especially confusion about what data it contained and who would have access to it. Most people were not interested in recording their medical data or accessing their SCR via HealthSpace, but some saw the potential for this new technology to support self management and lay care for those with chronic illness.
Conclusion Despite an extensive information programme in early adopter sites, the public remains unclear about current policy on shared electronic records, though most people view these as a positive development. The “implied consent” model for creating and accessing a person’s SCR should be revisited, perhaps in favour of “consent to view” at the point of access.”
Article
Trisha Greenhalgh, Gary W Wood, Tanja Bratan, Katja Stramer, Susan Hinder, BMJ, doi:10.1136/bmj.a114 (published 29 May 2008)

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Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data

Background:
This project investigates the ways in which patients respond to the shared use of what is often considered private information: personal health data. There is a growing demand for patient access to personal health records. The predominant model for this record is a repository of all clinically relevant health information kept securely and viewed privately by patients and their health care providers. While this type of record does seem to have beneficial effects for the patient–physician relationship, the complexity and novelty of these data coupled with the lack of research in this area means the utility of personal health information for the primary stakeholders—the patients—is not well documented or understood.
Objective:
PatientsLikeMe is an online community built to support information exchange between patients. The site provides customized disease-specific outcome and visualization tools to help patients understand and share information about their condition. We begin this paper by describing the components and design of the online community. We then identify and analyze how users of this platform reference personal health information within patient-to-patient dialogues.
Methods:
Patients diagnosed with amyotrophic lateral sclerosis (ALS) post data on their current treatments, symptoms, and outcomes. These data are displayed graphically within personal health profiles and are reflected in composite community-level symptom and treatment reports. Users review and discuss these data within the Forum, private messaging, and comments posted on each other’s profiles. We analyzed member communications that referenced individual-level personal health data to determine how patient peers use personal health information within patient-to-patient exchanges.
Results:
Qualitative analysis of a sample of 123 comments (about 2% of the total) posted within the community revealed a variety of commenting and questioning behaviors by patient members. Members referenced data to locate others with particular experiences to answer specific health-related questions, to proffer personally acquired disease-management knowledge to those most likely to benefit from it, and to foster and solidify relationships based on shared concerns.
Conclusions:
Few studies examine the use of personal health information by patients themselves. This project suggests how patients who choose to explicitly share health data within a community may benefit from the process, helping them engage in dialogues that may inform disease self-management. We recommend that future designs make each patient’s health information as clear as possible, automate matching of people with similar conditions and using similar treatments, and integrate data into online platforms for health conversations.”
Article
Frost JH, Massagli MP, J Med Internet Res 2008;10(3):e15, doi:10.2196/jmir.1053

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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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