Can patients benefit from reading copies of their doctors' letters about them?

Britain's Data Protection Act has raised the question of patients' access to their medical records. In the authors' study, patients at a rheumatology clinic received either a copy of the consultant's letter to their general practitioner or a post-consultation discussion with a staff member. Both patient groups were asked to rate the two approaches. A group of general practitioners and additional patients were asked to rank these approaches as well as the alternative of receiving a clinic letter in "everyday" language followed by a discussion with the physician. This last option was least preferred by patients; opinions on the other options were divided. Only 13% of the physicians approved of the clinic letter, and over half thought the consultant's letter was the worst option. The authors conclude that patients benefit from consultants' letters and recommend that patients be allowed more access to medical notes.     

Police and Criminal Evidence Bill and the BMA

The British Medical Association's efforts against controversial clauses in the pending Police and Criminal Evidence Bill have resulted in a government offer to amend legislation that would otherwise threaten the confidential nature of medical records and the physician patient relationship. The BMA maintains that if police were allowed complete access to medical records, treatment would be jeopardized because patients might withhold vital information from their physicians, and physicians would be reluctant to record potentially damaging information about their patients.     

Newly registered elderly patients: who are they and why such delay in the transfer of their medical records?

The time taken to transfer the records of elderly patients registering with a new general practice was investigated. Thirty five (5%) of a total of 671 patients aged 75 and over were entered as new patients on to the age-sex register of an urban group practice during one year. Twenty nine had moved into the area and six had changed their general practitioner for personal and other reasons. An average of 141 (range 71-296) days elapsed before dispatch of their medical records to the new practice. During this period an average of 3.5 (range 0-15) consultations with a general practitioner were recorded, indicating the need of such patients for medical care. The long delays were caused by the processing of medical records at the central register and the transfer of records between family practitioner committees and general practitioners. Delays were most apparent in the time taken for general practitioners to dispatch the necessary documents to the family practitioner committees, and these should be minimised. The use of a summary card written and updated by the general practitioner and retained by the patient would facilitate continuing care should patients change to a new practice. Meanwhile, assessment of elderly patients after registration with a new practice by a member of the primary health care team may identify problems before the records have been transferred and may help the resettlement of these high risk elderly patients.     

Secure Dynamic Access Control Scheme of PHR in Cloud Computing

With the development of information technology and medical technology, medical information has been developed from traditional paper records into electronic medical records, which have now been widely applied. The new-style medical information exchange system "personal health records (PHR)" is gradually developed. PHR is a kind of health records maintained and recorded by individuals. An ideal personal health record could integrate personal medical information from different sources and provide complete and correct personal health and medical summary through the Internet or portable media under the requirements of security and privacy. A lot of personal health records are being utilized. The patient-centered PHR information exchange system allows the public autonomously maintain and manage personal health records. Such management is convenient for storing, accessing, and sharing personal medical records. With the emergence of Cloud computing, PHR service has been transferred to storing data into Cloud servers that the resources could be flexibly utilized and the operation cost can be reduced. Nevertheless, patients would face privacy problem when storing PHR data into Cloud. Besides, it requires a secure protection scheme to encrypt the medical records of each patient for storing PHR into Cloud server. In the encryption process, it would be a challenge to achieve accurately accessing to medical records and corresponding to flexibility and efficiency. A new PHR access control scheme under Cloud computing environments is proposed in this study. With Lagrange interpolation polynomial to establish a secure and effective PHR information access scheme, it allows to accurately access to PHR with security and is suitable for enormous multi-users. Moreover, this scheme also dynamically supports multi-users in Cloud computing environments with personal privacy and offers legal authorities to access to PHR. From security and effectiveness analyses, the proposed PHR access scheme in Cloud computing environments is proven flexible and secure and could effectively correspond to real-time appending and deleting user access authorization and appending and revising PHR records.     

Legal obligation of physicians to disclose information to patients.

Obtaining a patient's consent is a routine daily process for physicians, although many are unaware of the scope of this legal obligation. In 1980 the Supreme Court of Canada changed the law relating to informed consent; promotion of patient autonomy shifted the focus from a standard of professional disclosure to one of a "reasonable patient." Physicians have a legal obligation to disclose to patients specific information, the scope of which is determined by a court on the basis of a reasonable patient's expectation and the circumstances of the case. This gives rise to many controversies in the practice of clinical medicine. It is difficult for physicians to know which treatment risks require disclosure, since this is decided by a court in a retrospective analysis of the evidence. Will the court recognize exceptions to the duty of disclosing information? If several health care professionals are involved in a patient's care who has the duty to disclose information? Can this duty be delegated? This paper provides physicians with guidelines that are consistent with the promotion of patient autonomy and comply with the doctrine of informed consent. In addition, it suggests ways of improving awareness of the doctrine and procedures to ease its application.     

e-Consent: The Design and Implementation of Consumer Consent Mechanisms in an Electronic Environment

The effective coordination of health care relies on communication of confidential information about consumers between different health and community care services. However, consumers must be able to give or withhold “e-Consent” to those who wish to access their electronic health information. There are several possible forms for e-Consent. In the general consent model, a patient provides blanket consent for access to his or her information by an organization for all future information requests. Conversely, general denial explicitly denies consent for information to be used in future circumstances, and in each new episode of care, a new consent would be needed to obtain information. In the general consent with specific denial model, a patient attaches specific exclusion conditions to his or her general approval to future accesses. In contrast, in the general denial with explicit consent model, a patient issues a blanket block on all future accesses but allows the inclusion of future use under specified conditions. There also are several alternative functions for an e-Consent system. Consent could be captured as a matter of legal record. E-Consent systems could be more active by prompting clinicians to indicate that they have noted consent conditions before they access a record. Finally, the record of patient consent could be fully active and used as a gatekeeper in a distributed information environment. There probably will need to be some form of data object that is associated with patient information. This e-Consent object (or e-Co) will contain the specific conditions under which the data to which it is attached can be retrieved. Given the complexity of clinical work and the substantial variation we can expect in an individual''s desire to make his or her personal medical details available, it is unlikely a “one size fits all” approach to e-Consent will work. Consequently, with a well-chosen consent design, it should be possible to balance the specific need for privacy of some of the population against the desire by others to err on the side of clinical safety, and clinicians desire to minimize the burden that an electronic consent mechanism would impose.The effective coordination of health care relies on the communication of confidential information about consumers between different health and community care services. Electronic data exchange and Internet technologies increasingly play important roles in such communications. Consumers must, however, be able to give or withhold consent to those who wish to access their electronic health information.For example, electronic patient records are seen by many as an essential prerequisite for health care,¹ opening up patient data to the whole clinical team involved in patient care. So, by definition, the presence of an electronic environment means that more clinical workers will be able to access patient information more often and in a greater diversity of locations. With the broadening of access to patient information comes the risks that such information is used for purposes not originally consented to by the patient.While much is known about the ways in which security technology can protect information transactions from unwanted interception,² very little work exists to determine how a consumer''s consent to view their private information is safeguarded in a networked and online environment. This report will outline a framework for obtaining and determining electronic consent (e-Consent) within health care. It will examine a range of models for e-Consent and examine some of the technical issues associated with transforming those models into working systems. It is not the intention of this report to make a specific judgment about which consent models are more acceptable or to make specific recommendations about the detailed implementation of an e-Consent system. Such decisions would need to reflect the legal framework within which any e-Consent system operates, and the expressed wishes of consumers regarding the strength of protection they desire.Specifically, the report proposes a set of basic design principles that any consent framework might need to adhere to and focuses on some of the trade-offs in system performance that these principles imply. It then examines various possible forms of consent, explores the ways that these can be implemented in an online environment, and examines how well these models reflect the design principles. Next, the report explores the nature of information exchanges in health care and uses this to reflect on the acceptability of the different consent mechanisms in the clinical workplace, as well as to consumers. Finally, the report develops a health transaction model and uses this to sketch the set of behaviors or services an e-Consent system will need to perform its key functions. Appendices contain detailed examples of information transactions in health and an example set of computational rules for determining consent.     

Usefulness of letters from hospitals to general practitioners

In an investigation of the communication between specialist hospital departments and general practitioners 97 general practitioners were asked to say how important selected items of information that the hospital could pass on would be for management of a patient receiving chemotherapy. In addition, the records of 68 patients were examined for coverage of these topics. General practitioners considered technical topics to be more important than social ones. Hospital letters covered technical topics well, apart from details of possible side effects, but did not do the same even for the two social topics that most doctors considered to be essential--namely, what patients have been told about their diagnosis and prognosis. Letters from hospitals to general practitioners cover technical topics well but should include more information relating to the social aspects of the patient's disease.     

Essentials of hospice: what every Oklahoma physician needs to know, Part II

Every physician, regardless of specialty, must advocate and facilitate patient access to comprehensive palliative and hospice care as their patients enter the last phase of life due to advanced disease or a terminal condition. Accordingly, physicians must become familiar with both the general and the disease-specific eligibility guidelines for hospice, the different levels of hospice care, physician re-imbursement for hospice patient care, and become knowledgeable in advance health care planning. The latter includes an understanding of Oklahoma's DNR law and the Advance Directive for Health Care (Living Will) law. Physician proficiency in the palliation of pain and non-pain symptoms that occur in patients at end-of-life is critical to alleviate patient suffering and to ensure the patient's peaceful dying.     

Mobile Agent Application and Integration in Electronic Anamnesis System

Electronic anamnesis is to transform ordinary paper trails to digitally formatted health records, which include the patient’s general information, health status, and follow-ups on chronic diseases. Its main purpose is to let the records could be stored for a longer period of time and could be shared easily across departments and hospitals. Which means hospital management could use less resource on maintaining ever-growing database and reduce redundancy, so less money would be spent for managing the health records. In the foreseeable future, building up a comprehensive and integrated medical information system is a must, because it is critical to hospital resource integration and quality improvement. If mobile agent technology is adopted in the electronic anamnesis system, it would help the hospitals to make the medical practices more efficiently and conveniently. Nonetheless, most of the hospitals today are still using paper-based health records to manage the medical information. The reason why the institutions continue using traditional practices to manage the records is because there is no well-trusted and reliable electronic anamnesis system existing and accepted by both institutions and patients. The threat of privacy invasion is one of the biggest concerns when the topic of electronic anamnesis is brought up, because the security threats drag us back from using such a system. So, the medical service quality is difficult to be improved substantially. In this case, we have come up a theory to remove such security threats and make electronic anamnesis more appealing for use. Our theory is to integrate the mobile agent technology with the backbone of electronic anamnesis to construct a hierarchical access control system to retrieve the corresponding information based upon the permission classes. The system would create a classification for permission among the users inside the medical institution. Under this framework, permission control center would distribute an access key to each user, so they would only allow using the key to access information correspondingly. In order to verify the reliability of the proposed system framework, we have also conducted a security analysis to list all the possible security threats that may harm the system and to prove the system is reliable and safe. If the system is adopted, the doctors would be able to quickly access the information while performing medical examinations. Hence, the efficiency and quality of healthcare service would be greatly improved.     

National health information privacy: regulations under the Health Insurance Portability and Accountability Act.

Health information privacy is important in US society, but existing federal and state law does not offer adequate protection. The Department of Health and Human Services, under powers granted by the Health Insurance Portability and Accountability Act of 1996, recently issued a final rule providing systematic, nationwide health information privacy protection. The rule is extensive in its scope, applying to health plans, health care clearinghouses, and health care providers (hospitals, clinics, and health departments) who conduct financial transactions electronically ("covered entities"). The rule applies to personally identifiable information in any form, whether communicated electronically, on paper, or orally. The rule does not preempt state law that affords more stringent privacy protection; thus, the health care industry will have to comply with multiple layers of federal and state law. The rule affords patients rights to education about privacy safeguards, access to their medical records, and a process for correction of records. It also requires the patient's permission for disclosures of personal information. While privacy is an important value, it may conflict with public responsibilities to use data for social goods. The rule has special provisions for disclosure of health information for research, public health, law enforcement, and commercial marketing. The privacy debate will continue in Congress and within the president's administration. The primary focus will be on the costs and burdens on health care providers, the ability of health care professionals to use and share full medical information when treating patients, the provision of patient care in a timely and efficient manner, and parents' access to information about the health of their children.     

Seeking health information online: does limited healthcare access matter?

Consumers facing barriers to healthcare access may use online health information seeking and online communication with physicians, but the empirical relationship has not been sufficiently analyzed. Our study examines the association of barriers to healthcare access with consumers’ health-related information searching on the internet, use of health chat groups, and email communication with physicians, using data from 27 210 adults from the 2009 National Health Interview Survey. Individuals with financial barriers to healthcare access, difficulty getting timely appointments with doctors, and conflicts in scheduling during clinic hours are more likely to search for general health information online than those without these access barriers. Those unable to get timely appointments with physicians are more likely to participate in health chat groups and email physicians. The internet may offer a low-cost source of health information and could help meet the heightened demand for health-related information among those facing access barriers to care.     

Bioethics of the refusal of blood by Jehovah's Witnesses: Part 2. A novel approach based on rational non-interventional paternalism.

Most physicians dealing with Jehovah's Witnesses (JWs) who refuse blood-based treatment are uncertain as to any obligation to educate patients where it concerns the JW blood doctrine itself. They often feel they must unquestioningly comply when demands are framed as religiously based. Recent discussion by dissidents and reformers of morally questionable policies by the JW organisation raise ethical dilemmas about "passive" support of this doctrine by some concerned physicians. In this paper, Part 2, I propose that physicians discuss the misinformation and irrationality behind the blood doctrine with the JW patient by raising questions that provide new perspectives. A meeting should be held non-coercively and in strict confidence, and the patient's decision after the meeting should be fully honoured (non-interventional). A rational deliberation based on new information and a new perspective would enable a certain segment of JW patients to make truly informed, autonomous and rational decisions.     

Designing Patient-Centered Personal Health Records (PHRs): Health Care Professionals’ Perspective on Patient-Generated Data

Currently, patients not only want access to various medical records their health care providers keep about them, but they also are willing to become active participants in managing their own health information and the health information of the ones they care for. Personal health records were developed to help fulfill this need. Health care professionals are instrumental in the successful adoption of PHRs. Nevertheless, a full understanding of different health care practitioners' views of PHRs, including how PHRs could fit into the existing health care system, is lacking. The purpose of this exploratory study is to investigate PHRs from the perspective of health care professionals. Twenty-one practitioners with 10 different specialties were interviewed. The results suggest that although PHRs were still a novel concept to the study participants, a majority of them did value information provided by patients and would recommend that patients keep such records. Participants with different specialties tended to look for different types of information to be included in PHRs, and wished the information to be presented in ways that supported their work, as well as supported knowledge discovery. The participants also expressed a need to share patient information, but had various concerns about sharing. The implications of the results of the study in regard to the design of future PHR systems are discussed.     

The challenges in making electronic health records accessible to patients

It is becoming increasingly apparent that there is a tension between growing consumer demands for access to information and a healthcare system that may not be prepared to meet these demands. Designing an effective solution for this problem will require a thorough understanding of the barriers that now stand in the way of giving patients electronic access to their health data. This paper reviews the following challenges related to the sharing of electronic health records: cost and security concerns, problems in assigning responsibilities and rights among the various players, liability issues and tensions between flexible access to data and flexible access to physicians.     

Physicians' attitudes toward using deception to resolve difficult ethical problems

To assess physicians' attitudes toward the use of deception in medicine, we sent a questionnaire to 407 practicing physicians. The questionnaire asked for responses to difficult ethical problems potentially resolvable by deception and asked general questions about attitudes and practices. Two hundred eleven (52%) of the physicians responded. The majority indicated a willingness to misrepresent a screening test as a diagnostic test to secure an insurance payment and to allow the wife of a patient with gonorrhea to be misled about her husband's diagnosis if that were believed necessary to ensure her treatment and preserve a marriage. One third indicated they would offer incomplete or misleading information to a patient's family if a mistake led to a patient's death. Very few physicians would deceive a mother to avoid revealing an adolescent daughter's pregnancy. When forced to make difficult ethical choices, most physicians indicated some willingness to engage in forms of deception. They appear to justify their decisions in terms of the consequences and to place a higher value on their patients' welfare and keeping patients' confidences than truth telling for its own sake.     

Impact of cuts in acute beds on services for patients

The current redistribution of resources in the National Health Service will require a reduction in the number of acute beds in many district health authorities. The effect of such a reduction on services for patients was examined. Two hundred and two general medical admissions and 201 general surgical admissions to hospitals in West Lambeth District Health Authority were reviewed retrospectively. The elements considered were the severity of the patient's illness at admission, the scope for reducing the length of stay, the potential for other forms of care, and what types of patients would be denied access at different levels of reductions in the number of beds. Given the assumptions a considerable potential for maintaining levels of service with fewer beds was identified. The finding was, however, that even if all of this potential was realised the cuts in the number of beds that are planned by districts that are losing resources would force real reductions in patient services. This suggests a "trade off." To increase services in districts that are gaining resources, real unmet need may have to be created in districts that are losing resources.     

Should general practitioners be informed of patients' convictions for drug offences?

Neville asks whether society might benefit if general practitioners were routinely informed by the courts when a patient of theirs had been convicted on drug charges. Four professionals respond to his suggestion. R. Gillon, an ethicist, rejects the proposal as potentially damaging to the physician patient relationship while offering little or no benefit to patients or society. J. Havard, Secretary of the British Medical Association, acknowledges that it might be advantageous to notify physicians of their patients' drug problems, but concludes that a permanent note of such a problem in a patient's medical record could be harmful, many offenders do not require treatment, and some offenders have no regular physician to notify. P. Tomson, a general practitioner, sees Neville's suggestion as harmful to doctor patient rapport. J.E. Over, a chief constable, recommends that Neville's proposal be considered seriously in light of Britain's growing drug problem.     

Diagnosis and management of hypertension: the stated practices of family physicians

Hypertension is an important and common problem in family practice, but there is no general agreement on the systolic and diastolic pressures at which it should be diagnosed and treated. Responses from 273 family physicians surveyed by mail in Metropolitan Toronto showed a wide variation in the pressures used as cut-off points. The probability that in a given patient hypertension would be diagnosed or treated at different systolic and diastolic pressures varied considerably among the physicians, the variation increasing with the age of the patient. There was also wide variation in opinion among the surveyed physicians about how often patients should be screened for hypertension; depending on the patient's age, up to 35% of the physicians stated that the blood pressure should be measured at every visit. Only one third reported using any one or more methods to ensure that patients with hypertension were not lost to follow-up. The family physicians with an academic appointment used higher cut-off points for diagnosis and treatment, and they screened and scheduled follow-up visits less frequently than those without an academic appointment.     

Primary care physicians and AIDS. Attitudinal and structural barriers to care

OBJECTIVE--To explore the extent to which primary care physicians are providing health care for people with human immunodeficiency virus (HIV) infection and to document barriers to HIV care giving. DESIGN--National random-sample mailed survey. PARTICIPANTS--Population-based random sample of 2004 US general internists, family physicians, and general practitioners in 1990. Response rate was 59%. MAIN OUTCOME MEASURES--HIV treatment experience, willingness to treat HIV-infected patients, negative attitudes toward homosexuals and intravenous drug users, fear of contagion of the acquired immunodeficiency syndrome (AIDS), perceived lack of information about AIDS, and time demands of HIV care. RESULTS--Most physicians (75%) had treated one or more patients with HIV infection. A majority (68%) believed that they had a responsibility to treat people with HIV infection, yet half (50%) indicated that they would not, if given a choice. Over 80% of respondents believed that they lacked information about AIDS and that caring for people with AIDS is time consuming. Further, 35% of respondents agreed that they "would feel nervous among a group of homosexuals" and 55% expressed discomfort about having intravenous drug users in their practice. Physicians who had treated 10 or more HIV-infected patients expressed less negativity toward members of these stigmatized groups who are likely to be HIV infected. CONCLUSIONS--These data suggest that many primary care physicians are responding professionally to the AIDS epidemic but that attitudinal barriers may be hindering some physicians from providing treatment to HIV-infected patients.