Health Informatics Blog moved to http://www.cdsharp.com/health-informatics-blog/
WordPress has been a wonderful platform for helping me get used to the ins and outs of blogging. However, I have recently consolidated my website and blog into my grant writing & consulting website at http://www.cdsharp.com. Please visit the blog there: http://www.cdsharp.com/health-informatics-blog/
Understanding US Health Care Reform
US Health Care Reform: A big deal!
As we travelled from Canada to and from Boston around the first week of July, the US Supreme Court ruling on health care reform dominated all media coverage. Hype and polarizing condemnation of the high court’s decision was rampant, with Republican presidential nominee, Mitt Romney, vowing to undo it if elected. This is not surprising. What was surprising was that most Americans we spoke to – Democrat or Republican – were also unhappy with the decision. Concerns ranged from fears that the new health care reform law would result in rationing of health care, to expectations that it would result in lower quality of care, along with increased costs to individuals, small businesses and the government. Many were skeptical about being required to buy insurance, seeing it as a curb on individual freedom and a step down a slippery slope towards socialism.
Need for reform
The US health care system is an expensive and inefficient system (see the McKinsey Global Institute report: Accounting for the cost of US health care: A new look at why Americans spend more. According to the US Census Bureau report: Income, Poverty, and Health Insurance Coverage in the United States: 2010, 49.9 million people were estimated to be without health insurance (p. 23). An overhaul of the system seems necessary, but with all the hype and political wrangling, it is difficult to sort out what is being proposed and why.
So what is being proposed?
Illustrating Health Reform: How Health Insurance Coverage Will Work
This 10-minute animated movie, written and produced by the Kaiser Family Foundation, is an excellent, balanced summary of what is being proposed and why.
Statistics, analysis and discussion from the Kaiser Family Foundation web site.
Details on health reform from the White House governmental web site.
New York Times: Health Care Reform
Article and related discussion, debate and news links.
Postsecret.com. Confessional 2.0!
Last week, I was fortunate to attend a presentation given at Western University, London, Ontario by Frank Warren, founder of PostSecret.com. He spoke to a capacity crowd of over 2000 students (mostly) and yet the presentation seemed very personal, casual and confiding. The audience was riveted – alternately moved to thoughtfulness, laughter, disbelief, and, occasionally, to tears. The success of PostSecret.com is fascinating. It speaks of the fantastic possibilities that the right blend of technology, human creativity, careful management (and empathy, in this case) can offer.
Frank started PostSecret.com as a local community art project seven years ago, handing out postcards to strangers in Washington DC and telling people to mail them back to him at his home anonymously, with a secret they had never shared with anyone else before. Of the 3,000 postcards he gave out, he received about 75 back, many with drawings, photos or other art, along with a shared secret. He then scanned and posted a selection of the postcards on his blog. Much to his surprise, he then started getting postcards from other cities in America, and then from around the world. So far he has received over 400,000 postcards, and still gets about 1,000 new secrets a week. There are travelling art shows of parts of the postcard collection, the blog gets around 1 million hits every week and 5 books of secrets have been published so far. Frank has a busy speaking schedule at college campuses and he has raised over $1 million to support mental health. Frank reads every postcard he gets. He speaks with respect for the sentiment expressed in each postcard, and with enjoyment of the art that expresses it.
I only discovered Postsecret.com last week and, hearing of its success, I recalled the quip about Wikipedia: it only works in practice, not in theory! Now I know more, it is not surprising Postsecret.com is so popular. Each postcard voices the need to share something, and this avenue provides a safe outlet. Souls are laid bare, yet no one is condemned or judged. No individual is identified, yet all of us can identify with some of the regrets, yearnings, resentments, fears or sly triumphs recorded in the cards. Many cards affirm a therapeutic benefit in being able to share their secret. This seems to be what Confessional 2.0 looks like! Collectively, the cards must contain a goldmine of research material about humanity!
NIH Commissioned Study Results on Race, Ethinicity and NIH Research Awards.
Findings of a US National Institutes of Health (NIH) commissioned study to investigate gaps in NIH grant success rates among various racial and ethnic groups have been published in the Aug 19 issue of Science. The study reported that even after controlling for education, institution, and other factors that influence the likelihood of success, black investigators were still 10 percentage points less likely than white investigators to receive a new research project grant.
Dr. Lawrence Collins, Director of the NIH, and Lawrence Tabak, NIH Principal Deputy Director, have pledged to remedy that with a thorough investigation of ways to improve the peer review process, encourage greater diversity on review boards, increase technical assistance to applicants in grant preparation, and support innovative ways to increase local mentoring of junior faculty. As they say in their commentary “Troubling data such as these require substantive action. Compelling evidence supports the view that diversification of the research workforce is an imperative for our nation’s continued success”. They call upon every institution and scientist supported by NIH to join in reinvigorating efforts to diversify the nation’s current and future biomedical research workforce.
The study can be downloaded here
Lawrence Tabak and Francis Collins Commentary on the study can be downloaded here.
News article about the study can be downloaded here
Peer review under review
Two interesting reports were mentioned on DocuTicker today concerning the use of peer review in scientific publications: Peer review in scientific publications by the U.K. House of Commons Science and Technology Committee; and Alternatives to peer review in research funding by the Rand Corporation.
A detailed examination of the current peer-review system was conducted this year by the UK Science and Technology Committee, examining its effectiveness, and touching on issues of impact, publication ethics and research integrity. Among its recommendations the report advocated for a development of standards and training for all editors and, particularly, for early-career researchers in peer review, acknowledging that the system depends on the integrity and competence of the people involved, and the degree of editorial oversight and the quality assurance of the peer review system itself. The committee felt strongly that research data should be fully disclosed and, especially in the case of publicly funded research, made publicly available, to ensure reliability, testing, and reproducibility. Citing the importance of post-publication peer review and commentary, the use of new media and social networking tools was seen as an “enormous opportunity for experimentation” as a supplement to pre-publication peer-review. As well post-publication review was recognized as an important vehicle in ensuring wide and expedient transmission of interesting research, facilitation of rapid review by the global audience, and in alerting the community to ”potential deficiencies and problems with published work”.
The Rand Europe Report, Alternatives to Peer Review in Research Project Funding acknowledged that while peer review is considered the gold standard for reviewing research proposals, it is not always the best methodology for every research funding process. The discussion of a set of established approaches that offer alternatives to traditional peer review are presented to inspire thinking among research funders to apply based on their situation and mission.
BodyMaps: a new consumer health research tool
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!
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
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”.
Health Informatics 