BodyMaps: a new consumer health research tool

June 7, 2011 5 comments

Today I read about an amazing new tool called BodyMaps, in a TechReview article by Brittany Sauser.  Body Maps was created by Healthline, a consumer health information provider, to enable anyone to learn more about the bones, muscles and blood-vessels that make up the human body, using an interactive, visual search tool that allows users to explore the human body in 3-D.  The best part is that it is very easy to use.  You can click on the “body menu”  which produces a list of links to various parts of the body, or you can search by body keyword, or easiest of all, click on part of the image provided.  For example, I clicked on the knee and got a close up image of just the knee, I could then explore various layers – the bones, blood vessels, muscles and  joints, which I could rotate for 360 degree views of the knee.  I could also see an MRI of a real-life knee joint, and watch videos showing osteoarthritis, total knee replacement and more. This is a fantastic reference resource – go to BodyMaps and see for yourself!

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Peer to peer healthcare– resources and personal reflections

The internet makes it possible for any of us to proactively manage health problems through research. We can locate facts, statistics, opinion, advice, experiences of others experiencing similar health problems, and academic and practitioner research. We can find this in a variety of media – print, video and audio.  How we go about the research and how we use what we find makes interesting study.

There is no question I would be lost without the ability to comb the internet for research relating to a health problem. However, getting to a satisfactory solution or to the point where I can formulate possible solutions to my particular need and/or questions to discuss with a health professional can be very time-consuming. And in instances where research turns up innovative or non-traditional approaches to treatment,  dilemmas of choice, access, cost, trust and communication can make for a very frustrating experience.

As an example, here is a recent, health-related problem tackled by my family.  Last year my mother, in India, needed a hip replacement.  My sister in India checked with her network of friends and acquaintances in Mumbai for recommendations of surgeons.  She communicated that information via phone and e-mail to the rest of us situated in three different countries. Some of the doctors had websites we could look at.  After Mum saw the doctor, she was told she needed a total hip replacement and provided with options and costs of hip prostheses from which she had to choose one.  The choices were for oxynium, cobalt/chrome on metal, ceramic on metal, metal on metal, cemented or non-cemented, 28” or 36” or 44” head (!)   We had to make the choice in a day or two.  The initial response was to choose the most expensive – surely that would be the best?  However, upon drawing on our pooled knowledge and research (discussions with product vendors;  knowledge of products this doctor was most familiar with; information from sites like NOAH and the Mayo Clinic; product descriptions at vendor sites; power point slides by van Langelaan on clinical and economic aspects of cemented and cementless hip prosthesis;  and particularly the Australian Joint Registry summary statistics; and 10 year data from the New Zealand Joint Registry on revisions)  we decided that the most expensive was not the best option.  Based on the research and on Mum’s age and condition of her hip, we opted for a combination of poly and metal, cemented with a 36” or larger head.  It appears to have been the right decision. However, we could only have a 28” head as a 36” was not available (!?!).

A Pew Internet and American Life Project report of its Peer-to-peer healthcare (February, 2011) study offers some insights into the circumstances that influence consultation with health professionals and/or with peers.  The results are interesting, though not surprising.  The majority consulted a health professional with a health issue, a little over half turned to family and friends for support and about a fifth turned to others who had the same health condition.  A very small proportion of health consultation and support from professionals took place online.  Peer-to-peer interaction with family, friends and fellow patients was most helpful in matters of coping with illness, particularly when dealing with rare disease.

Data Protection Day: Addressing the challenges of globalization and technology

February 13, 2011 1 comment

Data Protection Day is an annual event instituted by the Council of Europe to make the general public aware of personal data collected on them, and their rights with respect to privacy and protection of personal data .

January 28, 2011, the 5th annual Data Protection Day, was also the 30th anniversary of the Council of Europe  Convention for the Protection of Individuals with regard to Automatic Processing of Personal Data (Convention 108). The Convention is “a cornerstone of privacy and personal data protection in Europe”.  To mark this 30th anniversary, a high level meeting was held by the Council of Europe and the European Commission to address the new challenges of data protection brought about by globalization and technology. Streaming video of presentations of the meeting “Data protection 30 years later: from European to International Standards” offer a diversity of stakeholder and national viewpoints.

The ability to create, exchange, store and use information ubiquitously is dynamically changing business, social, healthcare and political landscapes worldwide, concurrently creating opportunities for economic and health benefit, as well as threats to individual privacy, national security and intellectual property rights.  Guaranteeing individual right to privacy in this changing environment is a challenge: how can data protection be assured without stifling innovation? what level of surveillance is possible in cyberspace that covers multiple jurisdictions? what enforcement mechanisms are necessary?  While individual nations have their own privacy legislation, definitions of data ownership and rights; the meaning of accountability and responsibility, the definition of fair information practices, the harmonization of national policies, and laws and enforcement mechanisms across national boundaries all need to be addressed within the context of modern realities.

The Council of Europe has issued a document soliciting public opinion on modernization of Convention 108. This document outlines, and asks for feedback to, specific issues relating to  the scope and  principles of the Convention;  the rights, sanctions and remedies comprising data protection and applicable law; mandates of data protection authorities, regulation of transborder data flows,  and role of the consultative committee.  Feedback is required via e-mail before March 10, 2011.

These issues are being addressed in nations around the world. We need to keep abreast of these discussions and participate where we can to help shape an environment of transparency, accountability and trust.

Other Resources:

Data Protection Day Activities in various countries

Sharply differing attitudes towards privacy in Europe and America are a headache for the world’s internet giants, Economist, June 17, 2010.

Commercial Data Privacy And Innovation In The Internet Economy: A Dynamic Policy Framework: This document  from the United States Department of Commerce Green Paper by the Internet Policy Task Force examines “policy approaches that reduce barriers to digital commerce while strengthening protections for commercial data privacy, cybersecurity, intellectual property, and the global free flow of information.”

Policies on Data Protection — European Commission DG Justice

European Union’s Data Protection Legislation

European Privacy and Human Rights (EPHR) 2010: by Privacy International, the Electronic Privacy Information Center (EPIC) and the Center for Media  and Communications Studies (CMCS) of a study funded by the EC Special Program “Fundamental Rights and Citizenship: 2007 – 2013”.

Availability of new e-Health Implementation Toolkit (e-HIT)

November 1, 2010 Leave a comment

The e-Health Implementation Toolkit is the product of the two-year research project, funded by the Service Delivery and Organization (SDO) stream of the National Institute for Health Research in the U.K, to identify the barriers and facilitators to implementation of e-health initiatives within the National Health Service. The e-HIT is intended to act as a sensitising tool – to help senior managers in their thinking and planning for an e-Health implementation in considering potential problems that will likely be faced and to help facilitate thinking about how they can be overcome or avoided.

The toolkit is downloadable from http://www.ucl.ac.uk/pcph/research/ehealth/documents/e-HIT.xls. It covers consideration of Context (including organisational factors, national and local policies, and other drivers of the implementation); Intervention (the impact on professional – patient interactions, inter-professional relationships, and the effectiveness and cost-effectiveness of the intervention); and Workforce (the impact of the intervention on workload, workflow, distribution of work between different user groups, the need for education and training, and the impact on relationships between professional groups). Reports are generated based on responses to items listed within the toolkit.

The development and formative evaluation of the e-Health Implemention toolkit is described in a paper, published in BMC Medical Informatics and Decision Making 2010, 10:61, available at: http://www.biomedcentral.com/content/pdf/1472-6947-10-61.pdf.

The what, why and how of implementing Personal Healh Record Systems

September 14, 2010 Leave a comment

Electronic health record (EHR) systems have greatly improved efficiency and safety in health care delivery: consolidating patient information, tracking prescription use, and enabling decision support.  These systems are controlled by the healthcare providers, some of whom can and do make patient information available to them electronically or via specially requested printed reports.  Patient health record (PHR) systems, introduced in the last couple of years, are a new development, allowing patients improved ability to access their health record at any time outside the care setting, and to even control information and access to that information.  While there are obvious concerns about privacy, control, and legitimacy, the attraction of PHRs to providers and policy makers is the ability to engage patients in their care and, in doing so, to improve care as well as control costs.

The PHR market is still very immature, but there are a number of approaches and developments already underway internationally, with vendors offering a range of possibilities.  Two reports may be useful to those considering the why, what and how of implementing a PHR system:

A 2008 report: The Value of Personal Health Records, by the Center for Information Technology Leadership (CITL), synthesized the best-available evidence and expert opinion into a simulation model of costs and benefits in different PHR scenarios to develop the value proposition of a PHR system.

CITL considered two primary components in a PHR system: infrastructure and applications utilizing the infrastructure. The PHR infrastructure included components and functions that would allow patients to collect and share their health information. Privacy and security functionality are expected to be embedded throughout the PHR system in both infrastructure and applications. The CITL model estimated costs to develop the PHR infrastructure; and the applications to support:

  • information sharing (medication history and test results);
  • information self-management (remote monitoring, web-based educational support); and
  • information exchange (medication renewals, appointment scheduling, e-visits).

Although the model has only been validated by a consensus review process among domain experts and so may differ dramatically from what will actually be experienced, CITI hopes that this will provide a framework for analysis and that extrapolation from the model can facilitate predictions of potential value to those considering employment of PHRs.

A more recent report by Alberta Health Services: Engaging the patient in healthcare: an overview of Personal Health Record Systems and Implications for Alberta, presents a very through and useful overview of PHRs, evaluation of PHR capabilities, a comparison of vendors and benefits and caveats of PHR systems.

There are three distinct categories of PHRs, differentiated by their underlying IT architectures:

  • Stand alone: For example, WebMD and RevolutionHealth: that offer an external user interface and data repository, allow patients to create profiles based on their medical history,  health-tracking that can identify patient risk factors for a range of diseases,  and enable users to connect directly with one another , but they don’t automatically interact with EHRs.
  • Tethered: Offered by large healthcare IT vendors that are predominantly focused on EMR/EHR solutions, for example: Eclipsys Sunrise, Epic Systems MyChart, Cerner Health Connections, and McKesson HorizonWP, who offer a PHR system as an extension of the provider’s health information system, allowing patients to view their personal information through a patient portal. These modules can include tools that enhance patient-provider interaction (e.g., e-scheduling, e-visits, pharmacy requests), disease/health management (via dashboards), and financial services. They offer limited decision-support and social networking capabilities, but most vendors are partnering with services such as GoogleHealth and Microsoft HealthVault to broaden the range of services and make patient data portable beyond the provider’s internal systems. Recently, Telus acquired an application by Sunnybrook Health Sciences Centre in Toronto: MYchart that enables patient access to health records, messaging to providers and clinicians, and limited health-management trackers. However, it apparently offers little ability to scale and interact with multiple systems.
  • Interconnected: Google Health, Dossia, Microsoft Health Vault, and Telus HealthSpace (in Canada) are the major players in this market, which is just getting started.  The  interconnected PHR.combines elements of stand-alone and tethered PHR systems, providing an external repository of health information that users can control and to which health systems can connect. The PHR functions as the user interface for a broad set of IT functions that can be linked to or built into the PHR through the vendor’s development tools. These systems can also collect data from multiple repositories across multiple settings or health systems. Telus HealthSpace is a licensed version of Microsofl HealthVault, but data is stored in Canada. Also, while most major players currently in the interconnected PHR systems market offer their solutions for free, Telus will charge health systems to build onto HealthSpace.

Apparently an interconnected PHR need not necessarily replace a tethered PHR, but be used in addition, to provide the user interface and access point for patients, with the tethered PHR system providing the connection with other IT capabilities (e.g., secure physician email). The most successful PHRs implemented at large health systems today have taken this approach (e.g., Kaiser Permanente, Cleveland Clinic, Beth Israel Deaconess Medical Center).

This white paper is the result of a two-week investigation, which included interviews with McKinsey experts in global healthcare and IT, and an expansive literature review, and analysis of industry and market research.  As the report points out, there are over 200 vendors in the fledgling, but rapidly growing PHR market, so there is a high degree of variability in both the nature and scope of product offerings.  This value of this report, therefore, is in understanding what is available, what is possible, and how to make the choice between alternative systems.

Fixing things not broken: The long-form census

The  furore caused by the Canadian government’s recent announcement — that it would replace the mandatory long-form census questionnaire that is sent to 20% of the Canadian population, with the National Household Survey that will be sent to 33% of the population, but without legal obligation to complete it = is understandable.

The problems that will result from this decision have alarmed the many agencies, municipalities, academics, school boards, charitable organizations and industry analysts who depend on the detailed data from this census for policy making, social and economic research and planning. Issues of compliance, introduction of self-selection bias, and the inability to compare results reliably over time – are very real and should give the government pause.

Yet, Federal Industry Minister Tony Clement insists the government has no intention of changing its decision, which was in response to complaints from citizens that the mandatory long form was invasive and coercive. However,  the Office of the Privacy Commissioner apparently received only three complaints about any aspect of the census in the past decade. Yes, those who have filled in the form have found it long, some of the questions may seem invasive, and being threatened with a jail term if one refuses to fill in the census is rather extreme.  However, given the vital importance of the data and its usefulness to the economic and social lives of Canadians, can the issue of invasiveness be better addressed through education (by, for example, co-opting the help of those chosen to complete the long-form by illustrating how important their help is to the process, and by explaining that the data is only available in the aggregate, that no individual data is revealed to those who use the data)? Can compliance be encouraged without extreme legal action (for example, by providing incentives to those who are required to fill in the form)?

The Government appears also to be pulling rank in going ahead with its decision. In response to Chief Statistician Munir Sheikh’s resignation over this issue, Tony Clement pointed out that Statistics Canada is not an independent agency.  This is true, Statistics Canada is an agency of the government as defined by the Statistics Act.    However, as reported on the Royal Statistical Society website, the government should take heed of the exhortation of David Green of the University of British Columbia, that Statistics Canada be allowed to operate at arm’s-length from political interference, as the Bank of Canada has for the past decade. “The same should be true of the national statistical agency. If statistical collection changes with the ideological whims of the government, the very basis of government decision-making, transparency and trust is shattered“.

Statistics Canada’s purpose is to provide statistical information and analysis about Canada’s economic and social structure, and to promote sound statistical standards and practice.  It enjoys an excellent reputation in the conduct of its mandate.

Exciting Development in Open Access Publishing: SpringerOpen

July 7, 2010 1 comment

Springer Science+Business Media one of the world’s largest Scientific, Technical and Medical (STM) publishers announced, on June 28, 2010, a significant expansion of its open access publishing activity with the launch of SpringerOpen, a new series of open access journals that will span all STM disciplines. Articles published in SpringerOpen journals will be freely and immediately accessible online, licensed under the Creative Commons Attribution License. BioMed Central, acquired in 2008 by Springer, will provide its expertise and technology to help establish the SpringerOpen portfolio.

Per BioMed Central’s blog on this development:

BioMed Central’s open access publishing expertise and technology will be used by Springer to launch this new series of titles, which will extend the benefits of open access publishing to authors and readers across all disciplines. BioMed Central’s Open Access Membership scheme, offered to institutions, societies, funders and corporations, will be extended to include the SpringerOpen titles. Articles published in SpringerOpen journals will also be sent automatically to participating institutional repositories via BioMed Central’s automated SWORD deposit mechanism.

The SpringerOpen journals will complement Springer’s existing titles and BioMed Central’s growing portfolio of 200+ open access journals in medicine and life science. The first SpringerOpen journals, which will open for submissions shortly, are:

  • Planetary Science
  • Global Energy
  • Journal of Mathematical Neuroscience
  • Health Economics Review
  • Journal of Mathematics in Industry
  • Journal of Remanufacturing
  • Environmental Sciences Europe
  • Security and Intelligence Informatics
  • Applied Microbiology and Biotechnology Express
  • Bulletin of Mathematical Sciences
  • Gold Bulletin
  • Psychology and Well-Being Research