FEATURE: How NGOs in Uganda exploit social media.
An article published in February 2012 by Ssozi Javie of New York's Open Society Foundations describes how local civic groups in Uganda are using social media as a platform to advance their cause, even in the face of poor connectivity and limited popular access to information technology. 'Communicating the Cause: NGOs and Social Media in Uganda'  cites several examples of NGO social media activities. The article concludes that "once NGOs start using social media, there is a danger that the organisations then forget about the other, bigger, portion of their target which does not have access to the Internet. NGOs have to constantly be reminded that social media is just a set of tools to share information. Yet, as the examples listed show, social media and other information technology tools are here to stay. Organisations need to learn how to adapt these tools to their own needs, or they risk being left in the dark."

  

In the wake of 'Obamacare', Americans furious with the result are Twittering of plans to move to Canada. Despite having the sort of universal healthcare system espoused by the President, that country is currently looking more appealing to these Twitterers than a United States after its new healthcare package has been installed in 2014. Indeed, Russ Limbaugh, an American talk-show host and political commentator, argued that Obama’s Affordable Care Act is likely to be “the largest tax increase in the history of the world.”

Remarks made in June 2012 on the subject of Canadian healthcare include the following: 

* A timely report published in late June 2012 by the Canadian Health Services Research Foundation and the Canadian Nurses Association, and written by two academics from Canada’s McGill University, ‘Better Value: An Analysis of the Impact of Current Healthcare System Funding-and-Financing Models, and the Value of Health and Healthcare in Canada’, concludes that ...
- Canadians are increasingly concerned about the future viability of their public healthcare system, though they remain highly supportive of the principle of universal healthcare.
- Per-capita spending on healthcare in Canada was more than 50% higher in 2010 than in 1996. The extra investment in healthcare has had some positive consequences, when judged by the public—though the Canadian public is also very insistent that the money be well spent and carefully directed. ‘Value is not simply about spending more’.
* One arthritis patient group from Canada commented in a PatientView report due to be published in early July 2012 ...
- The Canadian healthcare system “espouses the importance of chronic care, but still puts an inordinate amount of resources into acute care.”

* Tim Shufelt notes in an article published June 19th 2012 in the Ottawa Citizen, and entitled, ‘How the productivity of Canada’s healthcare stacks up to that of the US’ ...
- Canadians pay much less per capita on healthcare than Americans, while ranking higher among the most common measures of human health.

* On the other hand, the latest Sanofi Canada Healthcare Survey, published June 27th 2012, found that ...
- 51% of Canadians think they will continue to have access to their employer's healthcare benefits after they retire (even though they will not).

So, should US citizens migrate north?

Health NGOs are beginning to respond as the ramifications of a Supreme Court ruling on June 28th 2012 become appreciated. The Court approved the right of government to mandate that Americans buy insurance by 2014, a key provision of the Obama Administration's healthcare reform bill. The blog, Women are Watching, commented:
"Spread the word. Today, we’re celebrating a historic victory for women and families across the country:  the Supreme Court’s decision to uphold the Affordable Care Act — one of the greatest advances for women’s health in a generation.  After two years of legal limbo (remember that law suits were filed the same day the law was passed), we can finally breathe a sigh of relief, and talk concretely about what the law means. Because of the decision to uphold the law, women and their families will now have the certainty of access to affordable, quality care. Being a woman will no longer be considered a pre-existing condition — insurance companies will not be able to charge women higher premiums, nor will women be  denied coverage for 'pre-existing conditions' like pregnancy, and millions will gain access to birth control and lifesaving cancer screenings without co-pays". 

Alzheimer's Association TrialMatch® is more evidence of the increasing involvement of patient groups in the clinical
trial process. The TrialMatch service matches people with Alzheimer's, their caregivers, families and physicians, to more than 100 research studies, based on personal criteria (diagnosis, stage of disease) and location of trial. Alzheimer's Association TrialMatch also identifies trials which offer a reasonable chance to be accepted for enrolment.

Formed in 1980, the Alzheimer's Association is a leading voluntary health organization in Alzheimer's care, support and research in the USA.

The Alzheimer Association's 'Longest Day' campaign is scheduled for June 20th 2012. Campaign participants across the northern hemisphere will aim to conduct sunrise-to-sunset journeys to raise awareness and funds for the fight against Alzheimer’s disease.

Another major R&D partnership between a pharmaceutical company and a patient group has been announced. On June 13th 2012, the Juvenile Diabetes Research Foundation (JDRF) announced that it will partner with Danish pharma company Novo Nordisk to research novel medicines aimed at both preventing and treating type-1 diabetes. The R&D collaboration will be based at Novo Nordisk’s recently-opened type-1 diabetes centre in Seattle, and will look for discoveries associated with autoimmune processes (central to type-1 diabetes). The JDRF also maintains ongoing research projects into type-1 diabetes with Roche and Lilly.

The California-based Diabetes Hands Foundation presented the results of its Big Blue Test at the American Diabetes Association (ADA)'s 72nd Scientific Sessions, June 8th-12th 2012, Philadelphia. The Test, conducted between 2010 and 2011, looked at how over 10,000 people with diabetes managed their condition—testing their blood sugar, exercising, testing blood sugar again, and sharing their experiences on  BigBlueTest.org. For every test conducted, needy people with diabetes received life-saving supplies through Big Blue Test grants, awarded to diabetes charities in the US and around the world by the program sponsor Roche.

WEBSITE FEATURE: The Florida-based Annie Appleseed Project was founded over a decade ago by Ann Fonfa to disseminate information about complementary, alternative cancer therapies. Ms Fonfa's site aims to challenge existing approaches to treatment and research methods. She has proposed bringing complementary, alternative therapies that have been subject to proper scientific scrutiny into mainstream therapy. Today, about 90,000 visitors view the Project website monthly. Ms Fonfa and volunteers supporting the project regularly produce reports on people's responses to treatments, conduct visits to clinics, and attend meetings and conferences. The Project offers financial support to advocates who become involved in similar activities. Ms Fonfa believes that much remains to be done: health insurance in the US does not yet cover complementary, alternative medicines.

The Massachusetts Coalition for the Prevention of Medical Errors (MA Coalition), a public-private
partnership with a mission to improve patient safety and eliminate medical errors in Massachusetts, reports on a new initiative led by one of its members, the Massachusetts Medical Society’s Committee on Professional Liability. Seven major hospitals have launched a new 'apology-to-patients' programme aimed at saving an estimated US$2 million (€1.6 million / £1.3 million) a year in litigation costs in Massachusetts. The approach was developed by the MA Coalition, and details of it were published in the April 2012 report, A Roadmap for Removing Barriers to Disclosure, Apology and Offer in Massachusetts. The programme aspires to move society away from a culture of blame and denial in the case of medical mistakes/errors, to one of greater transparency in advocating the health needs of patients. Under the plan, health professionals and institutions will disclose to patients whenever an adverse outcome occurs. If appropriate, the healthcare staff involved will apologize for the event, and offer fair financial compensation (though patients can still sue, if they want). The Massachusetts hospitals participating in the initiative are: Beth Israel Deaconess Medical Center in Boston; Beth Israel Deaconess Hospital in Needham; Beth Israel Deaconess Hospital in Milton; Baystate Medical Center in Springfield; Baystate Franklin Medical Center in Greenfield; Baystate Mary Lane Hospital in Ware; and Massachusetts General Hospital in Boston.
 
The MA Coalition's membership includes consumer organizations, state agencies, hospitals, professional associations for physicians, nurses, pharmacists, long-term care, as well as health plans, employers, policymakers, and researchers.

For more information: http://www.ama-assn.org/amednews/2012/05/21/prsa0521.htm

Following the launch of the US government's national Alzheimer’s plan, the National Alzheimer's Project Act (NAPA), which was signed into law by the President in February 2012, the Alzheimer’s Foundation  of America (AFA) and Senior Helpers have joined forces to increase the provision of education and services to older people. AFA is a national patient organization that unites more than 1,600 independent member organizations nationwide with the goal of providing optimal care and services to individuals with dementia, their caregivers and families. Senior Helpers is one of the nation’s largest in-home care companies for older people. The NAPA calls for greater awareness and education about Alzheimer's disease, for the delivery of care-related services to affected families, and for public-private partnerships to accomplish Alzheimer's-related objectives. The AFA-Senior Helpers collaboration will result in AFA affiliate offices opening within 11 Senior Helpers franchises coast to coast,  as of June 1st 2012. The new offices will provide AFA Care and Resource Education Services (CARES). Eric J. Hall, AFA’s President and CEO, and a member of the government-appointed Advisory Council on Research, Care and Services that has been advising on the development of the US national plan, said that the collaboration had been driven by the size of the problem: “It’s clear that the Alzheimer’s epidemic has generated needs that far outweigh the resources of any one group.”

5.1 million Americans have Alzheimer’s disease, a progressive brain disorder that results in loss of memory and other intellectual functions. The prevalence is increasing in line with the aging population. Advanced age is the greatest known risk factor, and the incidence doubles every five years after the age of 65. Alzheimer's is the sixth leading cause of death in the US.
For more information: http://www.alzfdn.org/MediaCenter/2012/05-31.html