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.

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

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.

Most health records worldwide are still paper-based, and those in electronic format may be scattered among hospitals, doctor offices and specialists. Technology standards and data ownership issues are yet not clearly defined, so populating personal health record with data can be an onerous task.  Adoption of personal health records involves a fairly steep learning curve and a change in cultural mindset.   Finally, the cost of housing data and creating applications to make the data useable and secure is high.  Though disappointing, it is perhaps not surprising, therefore, that Google has pulled out of the personal health record space.

In Canada, Telus Health Space has moved into personal health record provision, building on the Microsoft Health Vault platform,  partnering with hospitals, health care associations, and academic research initiatives to standardize technologies and encourage development of applications to make PHRs more useful and user-friendly.  Telus Health Space is not free, however; it  is only available to users for a fee, which might make it a more sustainable business model.

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.

January 28, 2011, the 5^th annual Data Protection Day, was also the 30^th 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 30^th 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”.

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 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.

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.