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Postsecret.com. Confessional 2.0!

March 17, 2012 2 comments

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!

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Two practical and useful social media guides for research and policy engagement

September 19, 2011 Leave a comment

Two practical and useful social media guides for research and policy engagement

Social media has a significant impact on how individuals communicate, interact and collaborate.  It should be an important component in any researcher’s toolkit, to engage stakeholders, gather and analyse data, and disseminate findings. However, most often it isn’t, because  it is still so new, and because there is yet much to be discovered, explored and understood regarding its capabilities, utilities, pitfalls, and practical uses as a tool and mechanism in conducting and disseminating research.   Social Media: A guide for researchers  produced by Alan Cann of the Department of Biology at the University of Leicester, and Konstantia Dimitriou and Tristram Hooley of the International Centre for Guidance Studies, offers a  useful  and practical guide to engaging a range of resources.

Impact 2.0 – New mechanisms for linking research and policy  was originally developed by Cheekay Cinco and Karel Novotney, at the Association for Progressive Communications (APC) and is now managed and updated by Fundacion Comunica, with the financial support of the International Development Research Centre (IDRC).  It seeks to develop a body of knowledge about the use of Web 2.0 in policy-oriented research and design.  Perhaps on account of the scale, scope and speed of change in new communication tools and technologies,  these  tools have not been extensively exploited in promoting and strengthening links between research, advocacy and policy. This guide can be helpful to researchers who wish to better understand how social networking tools can be used to identify the main policy actors,  issues, connected themes, and opportunities; how  these tools can be used to encourage discussion, debate and collaboration; and  how to leverage them in  engaging and maintaining relations with policy makers and other important stakeholders.

Peer review under review

August 16, 2011 1 comment

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

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!

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.

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.

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.