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“As part of the development of criteria for personal health records (PHR), the CCHIT Work Group has spent a great deal of time discussing your privacy and how your PHR should handle it.”
Article
CCHIT Staff, PHR Decisions, 17 November 2008
“The new chair of the National Information Governance Board for Health and Social Care has criticised plans to make it easier for researchers to access patient information.
According to the Guardian, Harry Cayton has described plans to give researchers access to patient information to recruit for medical trials as “ethically unacceptable.” The proposals are included in the NHS constitution, on which public consultation closed last month.”
Article
Jon Hoeksma, e-Health Insider, 17 November 2008
“Harry Cayton was only appointed head of the health service data watchdog on 6 November, but he has wasted no time in putting the boot into how the NHS wants to treat patient data.
Cayton, the man who won UK citizens the right to opt out of having a centrally stored medical record, is unhappy with proposals which would allow medical researchers to trawl databases looking for people with certain medical conditions. They would then be allowed to write to these patients asking if, given their condition, they would like to take part in trials of new drugs or treatments.”
Article
John Oates, The Register, 17 November 2008
“As a medical researcher frequently involved in running studies to improve health I was disappointed to find your main article suggested the privacy of NHS patients would be undermined by a plan to let researchers have access to their medical files. The reader could easily walk away thinking the medical research community is attempting to bypass medical confidentiality, avoid consent, and recruit people as “guinea pigs” for God knows what. That is not true.”
Article
Simon Wessely, Joe Public Blog The Guardian 17 November 2008
“The privacy of millions of NHS patients will be critically undermined by a government plan to let medical researchers have access to personal files, the health information watchdog told the Guardian last night.
The prime minister and Department of Health want to give Britain’s research institutes an advantage against overseas competitors by opening up more than 50m records, to identify patients who might be willing to take part in trials of new drugs and treatments.”
Article
John Carvel, The Guardian, 17 November 2008
“Background: Many patients receive health care in different settings. Thus, a limitation of clinical care may be inaccurate medication lists, since data exchange between settings is often lacking and patients do not regularly self-report on changes in their medication. Health care professionals and patients are both interested in utilizing electronic health information. However, opinion is divided as to who should take responsibility for maintaining personal health records. In Sweden, the government has passed a law to enforce and fund a national register of dispensed medications. The register comprises all individuals with dispensed medications (6.4 million individuals, September 2006) and can be accessed by the individual online via “My dispensed medications”. The individual has the right to restrict the accessibility of the information in health care settings.
Objective: The aim of the present study was to evaluate the users’ attitudes towards their access to “My dispensed medications” as part of a new interactive Internet service on prescribed medications.
Method: A password-protected Web survey was conducted among a first group of users of “My dispensed medications”. Data was anonymously collected and analyzed with regard to the usefulness and design of the Web site, the respondents’ willingness to discuss their “My dispensed medications” with others, their reasons for access, and their source of information about the service.
Results: During the study period (January-March, 2007), all 7860 unique site visitors were invited to answer the survey. Invitations were accepted by 2663 individuals, and 1716 responded to the online survey yielding a view rate of 21.8% (1716/7860) and a completion rate of 64.4% (1716/2663). The completeness rate for each question was in the range of 94.9% (1629/1716) to 99.5% (1707/1716). In general, the respondents’ expectations of the usefulness of “My dispensed medications” were high (total median grade 5; Inter Quartile Range [IQR] 3, on a scale 1-6). They were also positive about the design of the Web site (total median grade 5; IQR 1, on a scale 1-6). The high grades were not dependent on age or number of drugs. A majority of the respondents, 60.4% (1037/1716), had learned about “My dispensed medications” from pharmacies. 70.4% (1208/1716) of all respondents said they visited “My dispensed medications” to get control or an overview of their drugs. Getting control was a more common (P < .001) answer for the elderly (age 75 or above), whereas curiosity was more common (P < .001) for the younger age group (18-44 years).
Conclusion: We found that users of the provider-based personal medication record “My dispensed medications” appreciated the access to their record. Since we found that the respondents liked the design of the Web site and perceived that the information was easy to understand, the study provided no reason for system changes. However, a need for more information about the register, and to extend its use, was recognized.”
Article
Montelius E, Åstrand B, Hovstadius Bo, Petersson G, J Med Internet Res 2008;10(4):e35, doi: 10.2196/jmir.1022
On 1 November 2008, all Dutch households received a letter and a brochure from Dr. Ab Klink, the minister of Health.
In this letter the minister informed the citizen about the upcoming introduction of an EHR and the exchange of data that will be the consequence of the use of EHRs. He also offered the citizen the possibility of a general opt-out of the exchange before December 15, 2008. An immens amount of turmoil was the consequence.
Confusion
Parliament is not happy with this letter and considers it premature, as the legislation process for the introduction of an EHR has not been completed yet.
Hundreds of people reacted on various websites. And most reactions were negative, some even extremely so. If these reactions were to be considered representative for the general opinion, The Netherlands would opt-out massively. Unfortunately this is, maybe for a major part, due to the fact that most readers seem to assume that they can opt-out of having their data stored electronically.
Information
However, the Dutch citizen has not been properly informed about what an EHR is, how it functions nor how privacy is guaranteed. No clarity has been given about who will have access to an EHR. The rules about consent are vague, to put it mildly.
Access
The documents seem to indicate that every and any caregiver will have access to the information. The citizen is given the possibility to opt-out completely. No information is given about the consequences of such an opt-out (nor of the benefits of an opt-in).
Little is said about giving specific access, i.e. access to specific caregivers and/or specific parts of the record. Some information is given about excluding specific information from general access, but those procedures are not entirely clear.
The patient can not access the record himself. Only a caregiver can grant him the possibility to view the record or receive a print out, and only on specific request from the patient. There is no guarantee that this will be a view of all information in the record, as the caregiver is entitled to exclude “his own thought process” from that information. Unfortunately, no definition is given of what is included in this thought process. So a preliminary diagnosis might be considered part of this thought process and therefore be excluded from the information shown to the patient.
There is no possibility for the patient to add or correct information.
Consent
The letter also indicates that each caregiver has to ask a patient for consent during his first visit. However, nothing is mentioned about official written registration of the consent (positive or negative), which seems to leave the patient with too little legal protection.
The letter refers the patient to their GP or pharmacist for more information about consent or opt-out. Which, of course, is not their task, nor will they have the time.
Conclusion
Apparently, the ministry failed to make the most important step in the introduction of a Dutch EHR, the supply of information to the people about benefits and possible draw backs and about the various procedures (access, consent, opt-out) involved in order to raise awareness and appreciation of these new developments.
Lodewijk Bos
for more see the ICMCC Dutch website.
“The new online health accounts that give consumers a way to store and keep track of their medical data are the newest frontier in the unregulated terrain of electronic health records.
While laws like the Health Insurance Portability and Accountability Act (HIPAA) provide certain protections for records, online health accounts fall outside those regulations because the commercial entities offering them – Google, Microsoft, WebMD and Revolution Health to name a few – are not “health care providers”, nor does the data necessarily fall under the definition of a “medical record”.”
Article
Sylvia Hsieh, Medical Law Report, 17 October 2008
“OASIS, a Boston-based international consortium that develops e-business standards, has formed a technical committee to standardize how health care providers and payers exchange privacy policies, consent directives and authorizations. The goal is to have standard formats for the exchange of this data to further interoperability of information systems.”
Article
Health Data Management, 9 October 2008
“One in five people in England may have objections to proposals for the Secondary Uses Service because of moral and ethical concerns over the use of their data, Catholic bishops have warned.
The Catholics Bishops Conference says that the proposed consent model for the SUS, which means patients would not give explicit consent for their information to be included in the service, needs further work.”
Article
Fiona Barr, e-Health Insider, 30 September 2008
“This document sets forth recommended policies and guidelines governing consumer consent and other safeguards relating to the exchange of personal health information in an electronic, interconnected health care environment. Interoperable health information exchange entails the exchange of patient health information among disparate clinicians, other authorized entities, and patients in real time while ensuring security and privacy. This process is facilitated by Regional Health Information Organizations (RHIOs) in New York. Interoperable health information exchange is essential to realizing the expected value of health information technology (IT) to support patient care improvements.
Consumer consent is an important element in achieving informed and trusted interoperable health information exchange as well as satisfying New York laws and regulations. RHIOs and their participants, and other technology service companies advancing interoperable health information exchange, are expected to implement and/or comply with the consumer consent and related policies outlined in this document. It is important to emphasize that consent policies must be accompanied by privacy and security protections relating to authentication, authorization, access and audit to earn patient trust and enable successful health information exchange. Comprehensive privacy and security policies and procedures will be published in the 4th quarter of 2008.
The policy recommendations set forth in this paper provide a starting point for advancing interoperable health information exchange in a nascent environment. These recommendations are expected to evolve over time. Additionally, the policy recommendations will be supplemented by more detailed operational guidance to support full implementation by RHIOs in New York.”
Draft Report
SCP, HISPC, September 2008
“The new consent to view model for the NHS Summary Care Record in England may also be applied to the detailed care records held by NHS organisations.
NHS Connecting for Health is to explore how the principle of ‘consent to view’ - announced as the new model for the SCR last week - could work when patients detailed care records are accessed.”
Article
e-Health Insider, 23 September 2008
“A national electronic record of patients health looks finally on the cards five years late after the NHS IT programme on Thursday changed the way patients will give their consent to the system.”
Article
Nicholas Timmins, Financial Times, 19 September 2008
“The NHS Care Records Board will today confirm that patients will be asked for permission to share their record at each clinical encounter.
In a much-anticipated move, the board has acted on the recommendations of the May 2008 UCL report on the first primary care trusts to adopt the Summary Care Record.”
Article
e-Health Insider, 18 September 2008
“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
“Patienten dienen zelf aan te geven dat ze hun gegevens niet in het EPD willen, anders geldt geen bezwaar informed consent.
Dit schrijft Minister Klink in een brief aan de Tweede Kamer.
Eind 2009 moeten huisartsenposten, huisartsen, apothekers en ziekenhuizen aansluiten. Een wet gaat zorgverleners uiteindelijk verplichten om aan te sluiten.
Het wetsvoorstel dat dit regelt ligt voor behandeling bij de Tweede Kamer.”
Article (Dutch)
HuisartsVandaag, 15 September 2008
“How would you feel about your personal health information flowing freely over the Internet between public health officials, health care providers, insurance and data clearinghouse companies, and others without your permission?”
Article
Sue A. Blevins, The Ithaca Journal, 1 September 2008
“The first London rollout of the new version of a key care records system, which went live in June at the Royal Free Hospital in Hampstead, has caused chaos according to a local newspaper report.”
Article
Leo King, Computerworld UK, 6 August 2008
“The implied consent model for the Summary Care Record (SCR) looks set to be scrapped in favour of a simpler consent model following a recommendation from Connecting for Healths advisory group.
Implied consent looks likely to be replaced by a model based on consent to view, providing a simpler more intuitive way for patients to decide who accesses their record.”
Article
Fiona Barr, e-Health Insider, 30 July 2008
“The exemplary GP has a clear and accurate practice website and seeks patients consent before giving sensitive information to other healthcare professionals, according to the latest guidance on good medical practice for GPs.”
Article
e-Health Insider Primary Care, 29 July 2008
“A GP campaigning against the consent model for the NHS Care Records Service (NCRS) claims a European Court of Human Rights judgement reinforces his view that the NHS database is unlawful.”
Article
Diona Farr, e-Health Insider Primary Care, 25 July 2008
“Patients who consent to a course of treatment should be presumed to have given implied consent to having their data used for medical research, a review of data sharing across government has concluded.
The NHS should also develop a system to allow approved researchers to identify patients who would be happy to take part in research for which explicit consent is needed, the review by Information Commissioner Richard Thomas and director of the Welcome Trust Mark Walport adds.”
Article
e-health Insider, 15 July 2008
“Patient confidentiality is absolute; patients must give their consent before their data can be used, General Medical Council president, Sir Graeme Catto, said this week.
Speaking at the BCS Primary Health Care Specialist Group summer conference, Sir Graeme said the insistence on consent was a good thing and would foster the partnership approach with patients.”
Article
e-Health Insider, 2 July 2008
“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
Dutch hospital makes patient data available to GPs.
Article (Dutch)
HuisArts Vandaag, 22 June 2008
“If you’re looking for a microcosm of the country’s health care system, you could do worse than the North Adams area of western Massachusetts.”
Article
George Lauer, iHealthBeat , 6 June 2008
“Do you want others to have access to your medical records?
Half of all GPs will consider refusing to put patient records automatically on to a new national database in defiance of the government, a survey finds.
The Guardian newspaper poll of 1,026 GPs and hospital doctors found many doubted the security of the new system.
Four out of five thought the confidentiality of their patients records would be at risk.”
Article
Heena R Modi, 31 May 2008
Privacy worries concerning the introduction of “eHealth”, the Belgian HIE platform.
Article (Dutch)
Nieuwsblad.be
Article (French)
Alain Jennotte, Le Soir, 30 May 2008
“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 persons 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 persons 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)
“GP representatives must ensure that a halt is put to the development of centrally-held patient records, this years local medical committees conference will hear.
The conference, to be held next month, is to debate a motion calling on the BMAs General Practitioner Committee (GPC) to stop the development of centrally-held records and to promote a national publicity campaign to warn patients of the risks arising from their records being held on a national database.”
Article
e-Health Insider Primary Care, 28 May 2008
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Scott Kozicki:
I agree with Jen that there’s patient “influence” but Lodewijk’s comment still...
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