BEARR Trust Annual Conference 2013
The Uses and Abuses of Social Networking for Health and Welfare NGOs in the BEARR Region*
London, 15 November 2013
Social media are now one of the main channels of information sharing world-wide. BEARR is on Facebook too. And while a large amount of fund-raising is carried out on social media, unfortunately there are downsides to them as well, with stories of cyber bullying, cyber grooming and other abuses of the virtual media all too frequently in the news. So the theme of this year’s conference was a very topical one. Robert Brinkley, Chairman of The BEARR Trust, opened the conference. He thanked CEELBAS and the Great Britain- Russia Society for their support and sponsorship. Introducing the theme of the conference, he observed that as technology advances, it allows organisations to do much more, and older people need to learn from the younger generation how to make the most of it. He introduced the first speaker, Dr Vikki Turbine, Lecturer in Politics, Glasgow University, who spoke about The Use of Social Media in the BEARR region.
Vikki described the project on The Internet & Everyday Rights in Russia that she has been involved in, with funding from the EESRC, and in cooperation with Professor Sarah Oates, of Maryland University. Her research was conducted in the city of Ulyanovsk, surveying how women perceive human rights and what means they use to access human rights and seek redress or solutions to their problems. The research looked at men’s and women’s use of online resources for emotional support, advice (including legal advice), sharing of advice/problems, and feeds into a growing body of research on growth of internet penetration and use in Russia.
The survey included 10 women and 10 men across an age range of 18 -58 years, with a mix of educational backgrounds, occupations, and status. For the women surveyed, health, social welfare and education were the most important topics on which they sought answers on-line. Men, particularly those in lower occupational groups, seemed more suspicious of the content they found on-line and its sources. Nevertheless, offline relationships and experiences remained central, with the internet a complementary resource. The research identified ‘firestorms’ i.e contentious social and economic rights issues (health, welfare, education, housing, childcare etc.) as case studies that would generate online content, (e.g. webpages, comments sections, media reports, forums, links, blogposts, social networking sites) and mapped the results. Vikki cited examples where people had sought advice from Ombudsman websites, when they had been given unhelpful or incorrect advice by local officials. She said that contrary to experience in the UK, which showed that more men use the internet than women, women in Ulyanovsk turned out to be more active than men, with men more suspicious of on-line sources. Apart from work and social contacts, people used the internet for daily bureaucracy e.g. passport renewals, banking, and medical appointments; for some local civic engagement e.g. animal rights, environmental campaigns, and for some discussion of politics and rights activism e.g. petitions, setting up campaigns, sourcing information, contacting authorities. She stressed, at the same time, that the use of the internet in Russia should not be exaggerated – only 20% of the overall population use it (though the numbers are growing fast), and the most vulnerable do not use it at all.
The next speaker was Elena Temicheva, from the Agency for Social Information, Moscow, where she works as editor. She spoke on NGOs and Social Media in Russia.
Elena said that ASI had been running a project with Internews since 2012 to support NGOs in the use of information technology. Social media began in Russia in 2006 with “Classmates in touch” (similar to Friends Reunited). Within a few months it had half a million users and remained the leading social website until 2012 when it was overtaken by Vkontakte which started up in 2007. Facebook is in third place, and is increasingly popular with NGOs. After these come blog platforms including Twitter and Livejournal. People first started to get together on-line in social activism during the bush fires in Russia in 2010. They began mapping the extent of the fires, and issued warnings when a new fire broke out. Volunteers helping to fight the fires used this information to direct their efforts.
There are now 300 apps which have been developed for use by NGOs. There are 400-600,000 NGOs in Russia, of which about 20,000 are active in the social sphere. Blogs are very useful in individual cases – these appeared before social media in Russia. For example, a teacher raises funds to bring sick children from other CIS countries to Russia for treatment, just using a blog. She does not have any organisation. A case on a different scale is the Russian Fund for Help, which was founded by Kommersant newspaper and raises millions of roubles every year. It uses relay fundraising in which celebrities each commit to raising a specific sum for a specific child in need. There are also groups of volunteers who organise themselves on-line without actually running an NGO. Another use of blogs is civic applications, such as the bush fires example above. And WWF has had a campaign called “Use your mouse to save a bear”. Blogs are in some cases being used instead of setting up an NGO because of official suspicion of NGOs. When people see photos and details of real people on-line they tend to be trusting and are willing to support or donate to the cause. In answer to a question as to whether topics such as domestic abuse and homosexuality are often featured on-line, Elena said that there is not a high level of public awareness of those issues but that they are dealt with more on-line than off-line because of official suspicion.
In the second session we linked up Azat Israilov of HealthProm, on Skype from Bishkek, with Fiona McLean, CEO of HealthProm, and Marina Kochevalova, Project Co-ordinator, NGO Starost v Radost (Russia) in the conference room to discuss The Use of the Social Media in NGO projects and programmes.
Fiona McLean gave some background on HealthProm, which is nearly 30 years old and helps with maternal and child health in Eastern Europe and Central Asia, including Afghanistan. Azat Israilov described the project to set up the first website for children with disabilities in Kyrgyzstan – www.kelechek.kg. The site was set up in 2009 and has 125 followers; it shares news and information, and over the past two years, other disability NGOs have joined in sharing information via the site. Another website was setup in 2011 for children with congenital disabilities. Their experience has shown that using social media helps NGOs in the field of disability become better known, are viewed as reliable partners and have even had international NGOs contact them to become partners. They are currently running a project to combat indifference, which is in its fifth year. They use social media to inform the off-line media about events they hold to raise awareness and enable parents to bring their problems to the notice of the authorities. One such event was to be held the following day in Bishkek.
Marina Kochevalova, Project Co-ordinator at the NGO Starost v Radost (Old Age with Joy), spoke about the project to reduce the isolation experienced by elderly people in care homes, in particular in the regions far from large cities.
They devised the idea of “pen-grandchildren”, matching up lonely elderly people with young people who like writing letters. Their first attempts to find volunteers, using contacts, didn’t work, so they put out a call on Vkontakte and soon had 13,599 followers. Other NGOs began to link up with the project and launched similar penpal initiatives. Later the NGO used Livejournal to raise awareness of the conditions in some care homes for elderly people, in particular in Nizhny Novgorod and in Pskov. Complaining to the authorities had not resulted in any changes, most people seemed indifferent to such cases. So they took the bold and controversial step of showing photographs of elderly people wrapped in plastic sheets instead of bed linen and with terrible bedsores. The photos produced instant results, with media attention and large amounts of money donated for bed linen and so on, and the director of one home was dismissed. Two years ago the NGO also tried Facebook and Twitter, but they found that Twitter required too much in the way of resources to update it four times a day.
The discussion which followed focused particularly on privacy aspects of the tactics Old Age with Joy had used – showing photos of individuals in care homes could in many countries be illegal. Care had to be taken to obtain permission, and not to show photos which could humiliate people. Marina stressed that publishing the pictures on-line had been a last resort, and had brought real results. Permission had always been asked, though she acknowledged that perhaps not everyone concerned understood the implications of posting a photo on a social media site. Another question was about cooperation with the Orthodox Church. Marina said they had tried this, but it had not been successful. Priests were willing to come and talk to elderly people, but what was needed was money to improve conditions. Azat was asked about the extent of internet use in Kyrgyzstan, and whether NGOs were subject to strict government regulation and investigation. He said that internet access in the towns and cities is very good, and is improving in the villages. There were no problems with registration or regulation.
Comparisons were made between websites, Facebook type social media and Twitter – websites are passive, while Vkontakte and Livejournal had proved good for fundraising and campaigning. Twitter was the most resource-intensive but could be used to back up campaigns by having messages retweeted. HealthProm representatives mentioned the benefits of social media to parents of children with disabilities by reducing their sense of isolation, and linking them with others in similar situations, and at the same time links could be made with international NGOs. A hub is planned for Tajikistan, with links to a website and Facebook. Azat explained how the NGO encourages parents to open social media accounts and shows them how to use them. Young people can show their parents how to do this. Marina said that in Russia awareness of the situation for elderly people had definitely increased as a result of the use of social media.
After lunch the conference focused on The Use of Social Media for Fundraising and Promotion. Myra Johnson, from Together for Short Lives, Bristol, and Olya Kudinenko, from Tabletochki, Kyiv,
gave presentations.
Together for Short Lives is a new charity which merged in October 2011 to be one voice for UK children’s palliative care. It represents the UK’s 49,000 children and young people with life-limiting and life-threatening conditions. Myra said that at the beginning many staff did not see social media as important. By now, however, the use of social media has more or less taken over from press releases and paid marketing. But social media need to be used strategically, which requires a big investment. Her organisation has five members of staff involved in communications overall, and the equivalent of one fulltime staff member working on social media. Apparently, 91% of online adults use social media regularly in the UK; there are 41 million Facebook users and 10 million on Twitter. These media should be used as a two-way conversation with clear messages and the right “tone of voice”. They are a way of providing stakeholders with content – an NGO should have a crisis plan ready, so that responses can be rapid if a news story flares up, and ideally, a staff rota to respond. You need lots of stories and ideas. Photos and videos are especially useful, and at least some of the content should be fun. And the stories must be truthful.
Olga Kudinenko has a fulltime job and volunteers in a children’s leukaemia hospital. She and other volunteers set up the blog Tabletochki to obtain funds for scarce and expensive drugs for the treatment of leukaemia. Tabletochki has just become an NGO and was the first NGO in Ukraine to use social media for fundraising. They had 100 followers at the beginning, and put up a slogan on-line “Your wallet or your life” and asked for just one Euro. Then they set up an event which was attended by 70 people, who gave 2,000 Euros. They introduced “happy cans” – collecting tins, took them to company offices with information about childhood leukaemia. The target audience was office workers, companies listed in Forbes, and large Ukrainian companies without charitable activities. On Childhood Cancer Day, they asked PR companies to take part and donate one day’s salary. Twenty three turned up and they raised $15,000. Tabletochki rented an apartment so that families had somewhere to stay in Kyiv while their child had treatment. People trusted them because they could see who was asking for money, and Tabletochki published photos of all their invoices e.g. for medicines. Tabletochki raises funds exclusively through social media and has raised more than $320 000 since October 2011. It has the most powerful Facebook charity page in Ukraine with more than 6,550 followers. Their next challenge is to raise funds for bone marrow transplants.
The last panel dealt with The Abuse of Social Media: Child Protection. The presenters were
Artur Kocharyan, Kyiv University and New Life NGO, Konotop, and David Niven, David Niven Associates.
Artur is studying communications at Kyiv University. He has been working on internet safety over the past four years and has given many talks in schools about it. He said that while many people think adult content is the most harmful material on the internet for children, this is not the case as it cannot do direct harm to the child. Artur presented some alarming statistics from surveys of children and their parents about what they use the internet for and whether they would ever go and meet offline someone they had “met” in the virtual space. 65% of 16-17 year olds use the internet every day. Of the time 10-17 year old spend on the internet, 52% is spent on social media sites, and 24% e-mailing. Only 9% is spent using the internet for doing homework! 46% had put their mobile phone number on their pages, and 36% their home address. 73% of parents believe their child to be protected when on the internet. 81% of parents believe their child would tell them about an invitation from a virtual friend to meet. But 74% of children said they would not tell their parents if this happened. 60% of teenagers had met offline someone they had first got to know on-line. Artur gave some chilling examples of stories told him during school training sessions by children who had taken this risk. His key message was that parents should not assume their children are safe on-line nor should they depend on software or filters to keep their children safe. Parents have the main responsibility to warn their children about the dangers, not least because teenagers do not always believe or obey what teachers tell them.
David Niven strongly supported what Artur had said. He gave examples of situations in which parents had inadvertently put their children in harm’s way, by for example, taking them to an under-13s football session which had been advertised on-line, without staying to check who was organizing the event. He said that there are 18 million false Facebook pages in the UK, many of them set up by parents for children under thirteen, who are not allowed to set up their own FB page. He spoke, as had Artur, about cyber bullying – statistics show that 1 in 6 teenagers are cyber bullied, and that cyber bullying victims are more likely to commit suicide than those bullied off-line. His presentation contained some recommendations on dealing with cyber-bullying. He also suggested that legislation might be needed in the UK to allow social workers such as child protection officers as well as police to visit social media pages – especially those that are set so that the public can view them – to obtain evidence of wrong-doing or dangerous behaviour. During the discussion concerns were raised about how children with special needs, in dysfunctional families or institutions, and so on could be made more aware of the dangers on-line. In these cases parental advice might be unavailable or inadequate.
After this sobering session, BEARR trustee Nicola Ramsden brought the conference to a close, thanking all BEARR’s volunteers for their work, and with very special thanks to Tatiana King, who had once again done a brilliant interpreting job. She thanked BEARR’s sponsors again – CEELBAS and the GB Russia Society.
* in the countries BEARR deals with: Russia, Ukraine, Belarus. Moldova, Georgia, Armenia, Azerbaijan, Kazakhstan, Kyrgyzstan, Uzbekistan, Turkmenistan, Tajikistan
