Online, does everything have to be bloody intentional?

A couple of days ago I wrote a piece that casually mentioned:

Online interactions are largely expected to be intentional. On purpose. Planned. People assume you did stuff for a reason.

Since then I have begun to realise this explains something that has been bugging me for a while now:

Why does much of what people say and do in online social networks sound phoney?

Dorrr... because they are doing it on purpose. They are being 'strategic friends'. Just look at many of the status updates you see posted on Facebook - they rarely tell barefaced truths or share some of the more stark realities of day-to-day lives. People love to share news about the cool things they have done, or the photos of exotic places they have been to, or the fun they had last night, but not how up tight they are feeling today or how crap their period is this month.

Sometimes I yearn to read some of the real things my friends are doing and facing. And therein lies the conundrum of platforms like Facebook. In friendship and human interaction, you just don't do things on purpose (ok, sometimes you do), you do things because you have moments of joy, openess, inspiration, fear, sadness, empathy or compassion.

When I open Facebook I am increasingly struck by the lack of balance that being 'personally strategic' with one another generates.

OK, back to real life I guess.

Engaging philanthropists: Where to begin?

…I knew I wanted to spend the rest of my life giving my time, money and skills to worthwhile endeavours where I could make a difference. I didn’t know exactly what I would do, but I wanted to help save lives, solve important problems, and give more young people the chance to live their dreams (1)

Some critical tides have been quietly changing in the non-profit and development world that have increased the relative importance of personal philanthropy to many organizations' fundraising efforts:

• Institutional donors have come under increasing pressure to reduce their transaction costs – preferring to administer larger grants to fewer organisations;
• The current climate of economic decline and uncertainty in many countries is bringing into question the sustainability of overseas development assistance programmes of industrialised countries and undermining the capital reserves of established foundations;
• Recent foreign exchange rate fluctuations have made the spending value of some secured grants unpredictable;
• Corporate and personal fortunes, combined with an increasing awareness of widespread equity challenges in many nations and communities, are fuelling a new era in philanthropy.

Engaging individual or corporate philanthropists is not simply a matter of sending the same fundraising proposal to a different contact. In many instances, new family foundations and corporate giving programmes reflect a personal motivation to make a difference in the world. In addition to being more ‘business-like’ than institutional donors (e.g., requiring higher levels of clarity and accountability), individual founders are often actively involved in their foundations. This means that understanding the underlying motivation of personal giving is vital to designing a sustainable philanthropy outreach and engagement programme.

Philanthropists are often driven by more personal needs and wants to other donors. They give, at least in part, based on an exchange of values that allows them to:

• Enhance their own sense of self-worth;
• See themselves in the beneficiaries being served;
• Do the ‘right’ thing;
• Create a return (or benefit) on their investment

Loyalty and trust are key ingredients of philanthropist engagement. They are each commanded by organizations that:

• Are seen as leaders in their field;
• Connect with supporters emotionally;
• Provide relevance and meaning;
• Help supporters to make a statement about what they value;
• Help supporters meet their own vision for the world;
• Provide them with a sense of belonging to something greater than themselves.

Engaging philanthropists should first be about building relationships based on the assumption that they are interested in the success of your organization, and a means to mobilize resources second.

Yesterday, the most successful non-profits were those that donors knew best. Today, the most successful non-profits are those that know their donors best (2)

References:

1. Former US President Bill Clinton in his book Giving: How each of us can change the world
2. From: Hart et al (2005): Nonprofit internet strategies: Best practices for marketing, communications and fundraising

In the online world, non-profits are what they do too

As we start the year of social aggregation and syndication (as 2009 has already been dubbed) web 2.0 gurus Seth Godin and Brian Solis are talking up how your ‘digital identity’ defines who you are in the online world.

Godin asserts that two major factors influence the way we perceive people through their online incarnations:

• On the web, people are judged almost entirely by their actions – usually by what they write.
• Online interactions are largely expected to be intentional. On purpose. Planned. People assume you did stuff for a reason.

I don’t doubt that either of those points is true. What they make me wonder though is whether non-profit organizations and international development agencies are taking too long to see that these new accountability rules apply to them too. I am convinced they are.

If you are what you do online, then the option for organizations to just rely on the reputation their logo carries is evaporating fast. Under the new rules, only organizations that are truly impartial, transparent and that provide reliable information about their work will pass the accountability test – and that does not apply to many health- and development-focused organizations at present.

The sooner individual organizations recognise this reality and enter the online space in a genuine and open way the better. Quick start entry options include:

• Introduce some simple and clear organizational policies for staff at all levels participating in online discussions and social networks;
• Develop guidelines encouraging senior managers in particular to start writing their own blogs;
• Keep track of what is being said about you by setting up Google Alerts on your organisation, specific technical priorities and high-profile people in your team;
• Set up a news/RSS feed aggregator that tracks website content from your closest partner organizations;
• Find out who in your team has a real interest in web 2.0. Task them with updating the team on significant new trends/tools in social networking. If nobody fits the bill, ask for independent advice from outside. Now.
  

Some of the most important players are stalled on the start line. The political realities and bureaucratic control that are central to some international organizations – such as those of some UN agencies – are incompatible with the openness and freedom of the online world. The paralysis resulting from that oil-and-water practicality will, unfortunately, not stop them from being judged by their online actions along with everyone else.

The good news is that this may present a window of opportunity for some smaller organizations and their flexible, forward-looking leaders, who can make the health and development sector online space their own before the sumos eventually arrive on the scene.

Go well Mildred

People don't care how much you know, until they know how much you care...about them

In 1999, I had the pleasure of working in Lusaka with a Zambian journalist called Mildred Mpundu. I recently heard that she passed away on 13th November this year. The song on the right is dedicated to Mildred, so you might like to listen to it while reading this.

My memories of Mildred had faded over time, but the message from Henry, another colleague in Zambia, brought them flooding back. It was September 1999, and we had an idea that individuals were best placed to write about the realities of HIV themselves - something so important should not be left to the big institutions who otherwise were still telling us what was going on and what should be done. We did not really know how it was going to work, but if we could just find some capable and dedicated individuals..... enter Mildred.

That year, the African AIDS conference (ICASA) was being held in Lusaka, Mildred's home town. Along with three other people, Mildred was part of the first ever 'Key Correspondent Team' we brought together for such an event. Manju Chatani from Ghana came to Lusaka to support the team with me, and the other KCs at the conference were Omololu Falobi (who went on to found Journalists Against AIDS in Nigeria), Koudaogo Ouedraogo (from the national TB programme in Burkina Faso), and Cecilia Rachier (an HIV counsellor from Nairobi, Kenya).

L2R: Manju , me, Mildred, Omolulu, Cecilia and Koudaogo

Here is how Mildred described her involvement at the time:

"As a journalist working with AF-AIDS and a daily newspaper in Zambia, the challenge that the HIV/AIDS pandemic has created in my life is immense. I have heard, seen and felt it in those far away and close to me. Hence my interest in contributing to the fight against this ugly "monster." Through pen and paper I hope I can help comfort or save a soul from this disease."

"People don't care how much you know, until they know how much you care...about them."

That left an impression then, but in light of Mildred's own subsequent life with HIV, these words mean a thousand times more to me now.

She was certainly one of the quietest KCs in that first team, and her writing during and after the conference was sharply focused on what HIV meant to individuals: One story about a young woman who thought she was infected with HIV by her teacher; another about the realities of eating well for people with HIV; even when she wrote about the Zambian government's response to the epidemic, she came at it from an angle of what they weren't doing to protect the well being of individual ministers.

When I read her work again today, I realise that they could just as well have been written yesterday as in 1999.

Mildred, through pen and paper (ok, keyboard) your voice was indeed heard loud and clear throughout Zambia, Africa and the world. You helped guide us all in those early years of HDN, and what we saw then helped hundreds of others to follow and also to speak their world.

Go well Mildred, and keep smiling.

A memorable moment from 1999: Omolulu, Manju and Mildred
are astonished that the Zimbabwean health minister would say
such a thing about Bill Clinton's sexual exploits!

The case for optimism



Google.org director Larry Brilliant uses a clip from an old Frank Capra movie to show that we've known about global warming for 50 years -- yet in half a century, we've done almost nothing to solve it. He explores this and other megatrends that could inspire pessimism. But, he says, there is a more powerful case for optimism.

Open letter: To HIV epidemiologists and surveillance experts

What is causing the HIV prevalence decline in Zimbabwe?

Recent reports state that ‘official’ HIV prevalence estimates in Zimbabwe have continued the decline seen in recent years: A decline was first reported in 2004, and again in 2006, and new figures indicate the downward trend has continued, with rates falling by 10 percent over the past 5 years.

What does this HIV prevalence decline really mean?

Are HIV prevention programmes working? That would be great news, of course. But with the current economic and health service situation in Zimbabwe, some people are sceptical and looking for another explanation of the drop in HIV. Are they underestimating the resilience and AIDS competence of the people of Zimbabwe?

Or is it time for us to start thinking that maybe some of the factors that influence HIV prevalence (good and bad) are not always obvious or intuitive, no matter how familiar the term now seems? I’ll give a few examples of the discussions currently heating up the HIV listservs, but really hope that some of you experts will weigh in on this to put me, and others straight.

I vaguely recall similar arguments being made by two researchers (Stoneburner and Low-Beer) in the late 90s, when they looked closely at apparent HIV prevalence declines in Uganda. So tell us, were they wrong, or just ahead of their time?

What drives HIV prevalence up?

Instinctively, we would probably say right away that HIV prevalence goes up when more people get infected with HIV (bad).

But presumably another perfectly reasonable explanation for rising HIV prevalence is better access to care and anti-HIV drugs. Think about it: Anti-retroviral treatments make people with HIV live longer, so it follows that significantly increased access to ARVs and other care services (good) should be expected to increase HIV prevalence.

What’s more, common sense tells us to anticipate this effect being most evident during the roll-out years of initial ARV programmes in particular (i.e. now in many places). Right?

What drives HIV prevalence down?

Again, instinctively you probably would say that HIV awareness and prevention programmes are working (good), people are changing their sexual behaviours (good), and as a result HIV prevalence is falling.

Another feasible explanation, presumably, is that more people with HIV are dying (bad).

If there is poor access to health care, treatments, and/or poor nutritional status among people with HIV, the delay between HIV infection and disease, and ultimately to death, is thought to be shorter (bad). If the number of people dying goes up relative to the number of new HIV infections, then HIV prevalence should be expected to down.

These factors are not mentioned much in news about of (falling) HIV prevalence, including in the recent coverage of Zimbabwe’s HIV ‘decline’. The headlines: "Youth getting the message" or "Awareness changes behaviour" leave no room for anything other than the belief that HIV prevention is working.

There is also a synergistic effect to consider that combines three factors to influence HIV prevalence – possibly in a compounded way:

1. Personal witness:

As more people with HIV find out about their HIV status, eventually get sick and pass away, more and more people are subject to the indirect impacts of the epidemic, and even more are personal witness to its ravages. They see their friends, family members, neighbours and lovers succumb to disease and die, they see children left without parents or teachers, and they see family assets stripped, food insecurity get worse and other impacts. This personal witnessing of the epidemic has to have a huge impact on people and their perceptions of risk.

Let’s just say for argument that some people are significantly affected by ‘seeing’ the HIV epidemic for themselves. This means that a proportion of people are going to voluntarily change their sexual behaviour as a result, and take themselves out of HIV’s way.

2. HIV has already ‘removed’ a proportion of people:

Remember too that in a country with sustained and high HIV prevalence, combined with less than ideal health services, a significant proportion of sexually-active people are already taken out of the HIV vulnerability ‘equation’ by sickness and death itself.

3. Out-migration

Poor income prospects and sky-rocketing inflation has also made labour out-migration from Zimbabwe for work even more frenetic. Who typically leaves for work? Young, sexually-active people.

Under the conditions currently seen in Zimbabwe (a relatively small country of 11.6 million people after all), should we expect to reach a point where the pool of uninfected, vulnerable and sexually-active people is going to get smaller and smaller?

Just like the labour shortages seen in rapidly-expanding economies, isn’t it possible that HIV just can’t ‘find’ enough young people to maintain previously high HIV prevalences?

Zimbabwe’s AIDS programme (and its international partners, incidentally) is openly celebrating the declining HIV prevalence as evidence that its HIV prevention programmes are working, but that could easily be just a part of the full picture.

There is a chance that one day soon we shall, in fact, look back and lament that ‘some’ HIV prevalence declines were evidence that specific nations or communities were witnessing the unnecessary destruction of entire generations, that people are not living with HIV as long as they could or should be, and that the socioeconomic conditions are driving young people elsewhere and to some exent at least out of HIV’s way.

Is this really that difficult a situation for experts to understand and explain? The AIDS intelligentsia must be worried how the “ARVs drives up HIV prevalence” story will be interpreted, but that’s no excuse to sit on it.

There must have been similar deliberations around how to make sure that the “circumcision prevents HIV transmission” data was not misinterpreted. Like then, Zimbabweans in particular have a right to know what declining HIV prevalence in their country really means.

With rumours flying around that the new UNAIDS Epi report (to be published today) will include ‘news’ of general declines in HIV prevalence in some countries (because of changes in the way estimates are made), there may have never been a more important time for epidemiologists to come clean and explain what they think declining HIV prevalence means under various HIV epidemic stages.

We are all ears.

WHO TB Strategy out of reach for many endemic countries

(This is an editorial I co-authored with Dr Bobby John from Global Health Advocates for World TB Day on 24 March 2007)

On the occasion of World TB Day on March 24, it is important to recognise that resistance to TB drugs has assumed very serious proportions. New global data on TB, published this week by the World Health Organisation (WHO), highlights weaknesses in many national TB programmes, which raises the potential for widespread TB drug resistance. How did the world reach this precarious state?

A WHO expert would argue that increasing levels of TB drug resistance "reflects a failure to implement the WHO Stop TB Strategy". The strategy hopefully maps out the steps that national TB control programmes need to take.

By all accounts then, national TB programmes are not living up to expectations.

The bacterium that causes tuberculosis (TB), Mycobacterium tuberculosis, is naturally sensitive to antibiotic drugs used to treat the disease. The accepted truth about how TB drug resistance starts is that it is mostly 'acquired' in individual patients, because of inadequate treatment with TB drugs, which are now at least 40 years old.

Poor patient drug adherence, or the use of too few drugs leads — the story goes — to various forms of drug-resistant TB. Multidrug-resistant TB (MDR-TB) is a specific type that does not respond to the two most powerful anti-TB drugs. Latest estimates are that MDR-TB makes up about 4 per cent of all new and previously treated TB globally. Apparently, the antiquated TB drugs are not working.

Drug-resistant TB is already geographically widespread, which includes places where TB control programmes have been in place for many years. But incredibly little is known about just how much TB drug resistance there is outside of capital cities, for example, and even in some entire countries where drug resistance may be common because of historically poor TB control.

No progress can be made if TB clinics are there but patients are not. Today's standard test for TB relies on a technique (sputum microscopy) invented over a hundred years ago. It provides no information about drug resistance. Apparently TB diagnosis is also failing us.

There seem to be too many weak links. Vital TB programme components have also been ignored for years, in favour of a single jewel in the TB strategy's crown: directly-observed treatment short course, or DOTS.

In many places, a consistent lack of focus and investment has led to chronically weak TB diagnostic and laboratory services; infrequent and incomplete TB drug resistance surveillance; inadequate management of individual drug resistant TB cases; and paltry TB infection control measures, including in health care settings.

Predictably, many TB-endemic countries have indeed failed to meet the exacting standards of the WHO Stop TB Strategy. Given the circumstances in many countries where TB is rife, what is surprising is that they should be asked to pursue such a pipe dream.

DOTS was supposed to stem TB drug resistance. Because of sloppy and unimaginative implementation, it is evidently failing us. As the full extent of TB drug resistance comes to light, prioritising TB drug delivery above all other areas of TB diagnosis and care looks increasingly like WHO has been building a house, just without foundations. We cannot now claim to be surprised when a decade of overlooking the systemic challenges faced by countries with high incidence of TB brings the entire house down.

Promoting policy frameworks is no replacement for working together to achieve what needs to be done to address TB. The Global Plan to Stop TB, (2006-2015), launched by the Stop TB Partnership just over a year ago, is a road map for such a coordinated action.

WHO urgently needs to look beyond 'their' Stop TB Strategy to help promote and coordinate the comprehensive range of actions set out in the plan and to recognise the track record of over 500 global partners who put their name behind it.

When she took office just a few months ago, the new WHO director-general, Margaret Chan, identified the organisation's many partnerships as one of her immediate priorities. "Either the partnerships have to change or we have to change or both of us have to change to be more relevant", she said. "What is important to me is, are we getting the results that matter?"

In the case of controlling TB drug resistance, the answer is an unequivocal 'no'.


About the Authors:

Dr Bobby John, is the Executive Director of the Center for Sustainable Health & Development, India, and President of Global Health Advocates
Tim France, PhD is Technical and Policy Adviser at Health & Development Networks, and Chair of the Stop TB Partnership Media and Events Task Force

This article was published in:

The Japan Times (Japan) (27 March 2007)

The Times of India (23 March 2007)

The Nation (Thailand) (24 March 2007)

The Manila Times (Philippines) (24 March 2007)

The Seoul Times (South Korea) (23 March 2007)

The Daily Monitor (Uganda) (27 March 2007)

The Kathmandu Post (Nepal) (23 March 2007)

The Daily Star (Egypt) (25 March 2007)

Asian Tribune (23 March 2007)

Cape Times (South Africa) (23 March 2007)

The Zimbabwe Times (Zimbabwe) (26 March 2007)

Scoop Independent News (New Zealand) (23 March 2007)

e-Health News (South Africa) (23 March 2007)

All Africa.Com (Africa) (23 March 2007)

The Times of Zambia (26 March 2007)

The Jerusalem Post (Jerusalem) (25 March 2007)

The Yemen Times (Yemen) (26 March 2007)

World News Network

More trust needed on shared global health goals

Despite unprecedented investment in international health programmes, seven specific diseases still claim one in every four deaths worldwide. There has never been a more acute need or opportunity for the World Health Organization (WHO) to do its job. To do so, the agency must achieve an extraordinary partnership among diverse stakeholders. Hasty criticisms of WHO in the past week reveal some of the challenges that working together presents.

With expectations rising about her leadership of WHO, Dr Margaret Chan’s recent unconsidered comments about compulsory licensing of essential drugs raise real concerns. But over-interpretation of her brief remarks by the media spawned a new analysis of WHO’s ‘position’ on compulsory licensing. AIDS organisations’ willing transformation of that analysis into an accepted truth appears increasingly like an unstrategic own goal with each passing episode.

Chan was in Thailand to take part in a conference on neglected diseases. Her keynote speech praised drug companies for their donations of drugs against diseases such as trypanosomiasis, lymphatic filariasis and schistosomiasis. These are medicines that are otherwise impossible to obtain for most of the people who need them. Media reports later referred to Chan as having “praised the pharmaceutical industry lavishly in her address,” without referring to the specific context of the drug donation programmes.

Earlier that same week, the military-appointed government in Thailand had exceptionally invoked three so-called ‘compulsory licenses’, giving the go-ahead for generic versions of corresponding drugs to be made – an entirely appropriate and permissible way for a country to get around the patent protection that companies hold. These mechanisms are legitimate exceptions to international agreements on trade-related intellectual property, or TRIPS, and aim to secure access to essential medicines. In the case of Thailand, two of the licenses were for HIV medicines, and the third was for a cardiac drug.

Not surprisingly given that news, during a briefing at the National Health Security Office in Bangkok, Chan referred specifically to the option of compulsory licensing: "I'd like to underline that we have to find a right balance for compulsory licensing," Chan said, adding, "We can't be naive about this. There is no perfect solution for accessing drugs in both quality and quantity." She also encouraged the Public Health Ministry to improve the public-private partnership in order to give the public better access to drugs.

The Bangkok Post interpreted this comment under the predisposed headline: “WHO raps compulsory licensing plan.” [not available on-line, download printable scan here]

Hearing her comments, activists were clearly disappointed that Chan was not taking a clearer stand in favour of TRIPS exceptions, in this their first glimpse of her view on the issue.

Ellen ‘t Hoen, from Medicins sans Frontieres in Switzerland, said at a press conference: “It is not the role of WHO to protect the interests of the pharmaceutical companies.”
“The new DG of WHO should have stood up for the poor,” added James Love, head of a US-based group lobbying for cheaper generic drugs.

The Inter Press news agency filed these and other quotes in a story titled: “WHO Chief’s stand on generic drugs slammed.”

The US’ largest HIV healthcare and prevention and education provider, the AIDS Healthcare Foundation (AHF), promptly issued a statement alleging that the new WHO Chief “Fails to Stand Up for People Living with AIDS.”

Further details were added to the story by a report from the Kaiser Family Foundation, which elaborated: “The World Health Organization on Thursday cautioned the Thai government on its decision to allow the country to produce a lower-cost version of Abbott Laboratories' antiretroviral drug Kaletra.”

A video clip posted to the Student Global AIDS Campaign web site showed former UN special envoy on AIDS in Africa, Stephen Lewis, imploring activists to take issue with WHO, which he claimed had:

“Effectively sided with the pharmaceutical industry, against the Government of Thailand and their decision to issue a compulsory licence for the creation of Kaletra at a much lower cost.”

The letter Lewis suggested they write duly arrived on Chan’s desk in Geneva on 8 February, eight days after her comments in Bangkok, bearing over 400 signatures of people living with HIV, and other organizations and advocates for treatment access from over 30 countries. It urged her to “reconsider her comments regarding the Thai government’s decision to issue a compulsory license.”

But had she “rapped” or “cautioned” the Thailand government about their decision? Had she really “sided with the pharmaceutical industry”? Did anyone take a moment to read beyond the headlines?

Chan’s comments are undeniably vague and now subject to endless interpretation. But rather than invest valuable energy and attention in responding to the possible implications of one uttered sentence, interpretation of WHO’s position should be based on their official statements on compulsory licensing and TRIPS. We should also rely more on the immeasurable advocacy that has already happened.

Surely collective energies would be better invested in openly and confidently assuring countries that the decision to issue any compulsory license is entirely theirs. There is no requirement for countries to negotiate with either the WHO or drug companies beforehand. So why create the impression that there is?

Years of activism, lobbying and nurturing of key relationships have got the TRIPS and drug patents debate to a place where countries like Thailand clearly are prepared to consider enacting – or even threatening to enact – TRIPS exceptions. Are we really ready to demean that solid foundation on the strength of one comment? And that from someone still in the first month of her new job?

If this was a shot across WHO’s bows to let them know they are subject to the scrutiny of AIDS NGOs and activists, then on that level it may have worked. So avidly and publicly doubting WHO’s position on TRIPS, however, is an implicitly weak and apprehensive position for advocates to adopt. Placing even the possibility of doubt so visibly in the spotlight may also, ironically, have helped inflate pressure for the Thailand Government to back down from using compulsory licensing. An outcome that has evidently already been reached (see Science and Development Network).

If Chan’s vague comments played into the hands of ‘big pharma’, as Lewis alleges, then their amplification by well-intentioned advocates can only have made matters worse. It certainly did not strengthen the hand of the Thailand authorities as they sat down to negotiations with Abbott Pharmaceuticals late last week.

Unquestionably, WHO should be front and centre when it comes to rigorous civil society scrutiny. To do its job properly, the organisation needs serious reconstruction work, as commentator Laurie Garrett recently suggested. “It is too soon to assess Margaret Chan's leadership, but even if it is impressive, the WHO is likely to remain an imperfect institution,” she added. “Still, it could exercise the power of the pulpit to corral well intended but often competing NGOs, donors, philanthropies, and local government agencies into following a shared strategic vision.”

If working together to promote global health is part of what we are all striving for, then some well-intentioned stakeholders need to cut Margaret Chan, and WHO, some slack.