Clinical Trials in the US – Begin involving the physicians and patients at the point of care to achieve greater success and participation with Personal Health Records

“There are many companies out there who have some very elaborate data bases and software to connect participants and investigators; however, what appears to be missing here is the patient and physician involvement at the point of care.
When looking for new participants it makes perfect sense to use real time updated information and for this to be a success and done quickly, instituting this information at the point of care will serve to increase the number of available participants and also create an awareness for physicians as to what is available, something that is missing with bringing electronic medical records together with clinical trial information.”
Article
The Medical Quack, 18 November 2008

An unhealthy invasion of privacy

“The news that the privacy of millions of patients is to be breached by the NHS underlines the first rule of government databases, which is that once any part of the state acquires personal information it comes to regard that data – however sensitive – as the state’s property.
The second rule is also confirmed by the proposal to allow medical researchers access to 50 million records in order to identify patients who might be willing to take part in trials of new drugs. It is that once data is centralised by government or one of its agencies, the function of that database is quietly extended beyond its original purpose and the way it was promoted to the public.”
Article
Henry Porter’s Blog, The Guardian, 17 November 2008

Cayton stakes claim to independence of NIGB

“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

UK health records should not be flogged off

“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

Researchers are not a threat to NHS patient privacy

“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

NHS medical research plan threatens patient privacy

“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

Patient data leaves NHS - officials answer our questions

“Nearly 300 million confidential medical records have transferred officially from the government to an academic organisation outside the NHS, Computer Weekly has learned.
The transferred records contain patient-identifiable information on nearly every stay by patients in hospitals in England, and visits to an accident and emergency department. Also within the transferred records are 215 million confidential files on visits to outpatient departments.
The downloaded files contain dates of birth of patients, their postcodes, NHS numbers and local hospital numbers.”
Article
Computer Weekly, 27 October 2008

Pumped up findings: Do publishing practices distort science?

“The credibility of scientific journals and the findings has come under attack multiple times this month via accusations of unethical editing and artificially pumped up findings.”
Article
Sarah Arnquist, The Health Care Blog, 23 October 2008

A nice reminder why I did it in the first place, but where is the patient?

On September 8 it was 4 years ago that I founded ICMCC, supported by my first, visionary board members. Medical and care ICT was something I had stumbled upon and knew little about in those days.
After the first 2 years, September 2006, we had a final definition of the word compunetics, thus being the only global organisation dealing with patient-related ICT. Unfortunately, by that time my mentor and ICMCC co-founder Swamy Laxminarayan had passed away and I was diagnosed with a very aggressive form of Non-Hodgkin.
During the past 2 years, ICMCC has developped itself. Our newspage, with an average of 6,000 unique visitors per month, has become an important source of information. Our Record Access Portal is still the only of it’s kind on the subject. Compunetics as a discipline is slowly entering other areas (e.g. behavioural compunetics), our annual conferences have become important meeting points, our proceedings are considered outstanding publications.

However, when you go through the emotional roller coaster that seems to be more or less obligatory after major treatment for a major kind of cancer, it is nice to read an article that reminds you of why you started it all in the first place. Prescription for change, from professor Amar Gupta, published in the Wall Street Journal on 20 October 2008, is such an article.

“In the future, there will be three often overlapping modes of delivering health-care services: services performed in person by humans, services that can be performed by people at a remote location, and services performed by computers without direct human involvement. Offshore outsourcing in combination with a 24-hour work cycle will be appropriate when certain conditions are met — mainly, if the information involved in the task can be digitized, and if workers at different sites can do their jobs independently from one another.”

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Finding a Needle in a Haystack

“Some might call it “data mining on steroids.” But the organizer of an ambitious research project at Montefiore Medical Center in New York describes it as “asking clinically cogent questions of ragged data while respecting the need for user flexibility.”
No matter what you call it, the Clinical Looking Glass project, headed by Eran Bellin, M.D., is taking data mining to the next level. The application, 10 years in the making, is enabling some 250 physicians to conduct their own ad hoc research studies. Some are as simple as identifying all patients taking a drug that has been recalled. Others are far more complex, such as assessing whether a certain type of filter is beneficial to patients with blood clots.”
Article
Howard J. Anderson, Health Data Management, 1 October 2008

One in five could object to SUS data use

“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

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

Nevada signs up for biosurveillance service

“A private company that offers biosurveillance services has obtained a Nevada State Health Division contract to monitor public health conditions statewide in real time.
Health Monitoring Systems of Pittsburgh will work with state officials to connect 60 hospitals, urgent care centers and other health facilities to the company�s EpiCenter service.”
Article
Nancy Ferris, Government Healt IT, 22 August 2008

Pilot project for distributed research network will use EHRs

“The Joseph H. Kanter Family Foundation and the eHealth Initiative Foundation have launched a pilot project for a distributed research network that leverages electronic health records to support the clinical effectiveness of treatments for certain conditions and diseases.
The Partnership for Connecting for Research on Outcomes and Effectiveness will work with experts and healthcare stakeholders to explore the organizational, technical and policy aspects of using a distributed network to give physicians and patients the best data on treatments for a particular disease.”
Article
Molly Merrill, Healthcare� IT News, 12 August 2008

Kansas health agency will get a window into its data

“The Kansas Health Policy Authority has awarded a $4 million contract to Thomson-Reuters for the creation of a virtual data warehouse that will allow the authority to examine patterns of health care and costs in the state.
The warehouse, known as the Data Analytic Interface, will include data from the state�s Medicaid Management Information System, the state employees health benefits program, the Kansas Health Insurance Information System and the state workers compensation program. These programs cover about 1 million of the state�s 2.7 million residents.”
Article
Nancy Ferris, Government Health IT, 5 August 2008

Healthvault is not a PHR - Quotes from the ICMCC Event Panel

Below are some appetizing quotes from some of the members of the ICMCC 2008 Panel discussion.

View the complete panel discussion.

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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

CBO assesses return on investment of HIT

“The return on investment of health care information technology isn’t uniformly positive, according to a recent analysis from the Congressional Budget Office titled, Evidence on the Costs and Benefits of Health Information Technology.
The underlying rationale for the report, which was requested by the Senate Budget Committee, is to sort out the federal government’s role in health IT. The report asks, “Whether � and if the answer is yes, how � the federal government should stimulate and guide the adoption of health IT.”
Article
Jane Sarasohn-Kahn, The Health Care Blog, 30 May 2008

On the importance of intellectual property rights for e-science and the integrated health record

“An integrated health record (IHR) that enables clinical data to be shared at a national level has profound implications for medical research. Data that have been useful primarily within a single clinic will instead be free to move rapidly around a national network infrastructure. This raises challenges for technologists, clinical practice, and for the governance of these data. This article considers one specific issue that is currently poorly understood: how intellectual property (IP) relates to the sharing of medical data for research on large-scale electronic networks. Based on an understanding of current practices, this article presents recommendations for the governance of IP in an integrated health record.”
Abstract
Giuseppina D’Agostino, Chris Hinds, Marina Jirotka, Charles Meyer, Tina Piper, Mustafizur Rahman, and David Vaver, Health Informatics Journal, Vol. 14, No. 2, 95-111 (2008), DOI: 10.1177/1081180X08089318

Experts say ’secondary use’ of data could prove primary

“To overcome elusive ROI figures on electronic medical record projects, vendors have been touting the value of digitized data for secondary uses such as drug recall notification and post-release pharmaceutical studies.
But as a panel of experts assembled in the nation’s capital pointed out on Monday, calling those applications “secondary” betrays a limiting perspective on technology.”
Article
Jack Beaudoin, Healthcare IT News, 6 May 2008

ICMCC Panel Discussion

I’m very proud that we have been able to put together a discussion panel on web-based personal health records. It might very well be on of the first of its kind. Although Google probably will not be present at the panel, Microsoft (Healthvault) will be. So will HealthSpace, a secure online personal health organiser delivered by the UK NHS. We also invited the Wellcome Trust, as they do a lot of research involving secondary use of patient data. There will also be a Caldicott Guardian on the panel, a senior person responsible for protecting the confidentiality of patient and service-user information and enabling appropriate information-sharing. Finally a representative of the department of BERR will take part; they deal with IT innovation. From this list it is hopefully more or less clear what the major issues of the discussion will be: privacy, confidentiality, data handling procedures.

I myself will probably also sit on the panel. Not as ICMCC president, but as patient. I think that my experience with Non-Hodgkin and all the mistakes I had to survive on top of the cancer can be of use. And in such a panel it helps to be an informed patient.

Lodewijk Bos

Pilot project shows EMRs improve public health reporting

“Electronic medical records could enable faster, more accurate and more comprehensive reporting of diseases than traditional physician-initiated or even automated laboratory-based reporting systems, according to the results of a recent pilot project led by researchers from Harvard Medical School and the Massachusetts Department of Public Health (DPH).”
Article
Heather B. Hayes, Government Health IT, 17 April 2008

Tectonic Shifts in the Health Information Economy

“In a recent shift in the health information landscape, large corporations are seeking an integral and transformative role in the management of health care information. The mechanism by which this transformation is likely to take place is through the creation of computer platforms that will enable patients to manage health data in personally controlled health records (PCHRs). Two types of large corporations are involved. Technology companies such as Google and Microsoft see business opportunities, whereas Fortune 100 companies in their role as employers securely store, access, augment, and share their own copy of electronic health information. Though this shift in the locus of control of health information is driven largely by a need to provide assistance with clinical care processes, it will also profoundly affect the biomedical research enterprise. We illustrate this shift with a two-part scenario in which a patient fills her PCHR with data from multiple sites of care and then participates in research.”
Article
Kenneth D. Mandl and Isaac S. Kohane, NEJM, Volume 358:1732-1737, April 17, 2008, Number 16

The coming surveillance of our health records by the government

“There’s a long-standing belief that one of the guiding principles of medicine is that our medical records are confidential, and that our health matters are not disclosed to anyone other than ourselves, another physician who is consulting or taking over our care, a person we specifically give permission to see our record and - in the case of certain infectious diseases - the local health department, if it’s mandated by law.”
Article
Thorswitch, TeamSugar, 13 April 2008

EFPIA makes recommendations on EMR use

“The European Federation of Pharmaceutical Industries and Associations (EFPIA) has issued recommendations for EU policymakers on the use of shared electronic medical records in clinical research.
Industry representatives argue for structures that guarantee both patient privacy and make clinical research more efficient.”
Article
e-Health Europe, 9 April 2008

Standards for Secondary Uses of Data

“Health Information Exchanges and Regional Health Information organizations typically focus on the exchange of patient data for clinical care. Use cases include providing clinical histories to Emergency Departments, pushing laboratory/radiology results from hospitals to physician offices, and supporting referral workflow between primary care clinicians/specialists.”
Article
John Halamka, Life as a Healthcare CIO, 25 March 2008

CDT launches new project to tackle PHR privacy issues

“The Center for Democracy & Technology has launched a project on health privacy and information technology in collaboration with the Health Privacy Project.
CDT’s Health Privacy Project will take on key policy questions, including the proper role of notice and consent, the right of patients to access their own health records in electronic formats, identification and authentication, secondary uses and enforcement mechanisms.”
Article
Molly Merrill, Healthcare IT News, 11 March 2008

Strengthen privacy protections for e-health data, top panel recommends

“In a new report, the National Committee on Vital and Health Statistics calls for stronger privacy protections for individuals� health records as those records are digitized and delivered over networks.”
Article
Nancy Ferris, Government Health IT, 7 January 2007

UM researchers to review files of 11 million Humana patients for drug problems

“University of Miami researchers will scour the medical files of 11 million Humana Inc. patients looking for dangerous effects from prescription drugs, under a new project unveiled Wednesday.”
Article
Bob LaMendola, South Florida Sun-Sentinel, 23 August 2007