Consultation paper

Copenhagen
13 December 2004

"Jigsaw" consultation paper

Franklin Apfel

Introduction

This workshop will explore ways of enhancing the engagement of existing public health and health care networks in addressing information and leadership challenges to rolling back the HIV/AIDS epidemic in Central and Eastern Europe.

The HIV/AIDS Ask? and Act! – It's Your Health campaign is proposed as a globally-supported, locally-applied set of activities aimed at catalyzing a broader demand for HIV/AIDS prevention and treatment information (and supportive policies) and strengthening the capacity of health leaders and information mediators, e.g. health professionals, media, policy spokespeople, NGO advocates, and private sector advertisers, to respond effectively.

This consultation paper[1] identifies ten "jigsaw" pieces to be considered by participants in considering whether and how such a campaign could assist ongoing efforts to curb the HIV/AIDS epidemic in high risk cities in Russia, Ukraine, Estonia and Latvia. How these "jigsaw" pieces fit together and what other pieces may be necessary in each specific information marketplace will be the focus of discussions. Our aim is not to complete the puzzle, but rather to agree some strategic communication principles that will allow us to begin sorting the pieces and finding best fits for our marketplaces of interest. While the focus in this initiative is on HIV/AIDS, the public health communication competencies developed through this process should be applicable to many other issues.

1. Starting out – Get to know your information marketplace

Question 1: Who are the HIV/AIDS communicators in your information marketplace? How much time, space and attention does the issue get? What is the editorial slant? Who influences how issues are reported?

"Good intentions and personal commitment are important but will not be enough. Good science will be necessary to guide our interventions, increase our credibility, and assure the prospects for success." (Wallack et al, 1999)

HIV/AIDS communication audits and surveys can provide up-to-date information on capacities, activities, attitudes, strengths and weaknesses of health communication actors, including broadcast media, newspapers, ministries, educators/professionals, NGOs and the private sector. They provide baseline data for planning and evaluation.

Media monitoring, audits[2] and surveys are ways of doing both a needs and resource assessment and provide a basis for discussion, planning and action.


Box 1
Audit checklist

  • Is HIV/AIDS being covered in the news? By whom? In which channels?
  • What are the main themes and arguments presented on various sides of the issue?
  • What is missing from the news coverage?
  • How are issues being framed (see below)?
  • Who is reporting, campaigning, advertising on HIV/AIDS or stories/products related to it?
  • Who are appearing as spokespeople?
  • Who is writing op-ed pieces or letters to the editor?
  • What solutions are being proposed? By whom?
  • Who is named or implied as having responsibility for solving the problem?
  • What stories, facts, or perspectives could help improve the case for this campaign?



2. Alliance building – networking networks

Question 2: How can the global and regional networks best serve local HIV/AIDS information needs? How can local action shape global strategies?

Networking is an instrument to promote innovation, commitment to change, international cooperation, joint development, collective learning, capacity building, alliance building, experience sharing, information exchange or any combination of these. Effective links between local, regional and global networks can help public health advocates at all levels to track and address health trends, develop and disseminate common health messages and themes, whilst at the same time celebrating and nurturing cultural differences.

Coalitions can access extra resources, expertise, leverage and energy. Broad and active alliances will also attract political and media interest.

Box 2
Characteristics of successful global public health alliances
(McKinsey et al, 2002)

Value added: successful alliances had clearly identified the advantages of cooperation, and the actions needed to capture these.

Structure of alliance: success also depends on whether the alliance structure fits its needs and goals. For example, if a loose alliance is needed to meet the alliance goals, the structure should be simple and flexible, rather than tightly integrated.

Specific performance indicators and contributions of partners: these need to be agreed early on, to focus efforts and to ensure efficiency.

Balance between participation and effectiveness: successful alliances tend to encourage input from and consultation with all parties, without necessarily involving all in lengthy decision-making processes.

Staffing: crucially, strong alliances need staff whose main objective is its success, rather than being staffed entirely by part-timers.


3. Target audience – Information for whom?

Question 3 – Who will be the primary and secondary target groups? What messages? What channels? What intermediaries?

"HIV/AIDS is met with suspicion and ignorance. Inadequate awareness and insufficient evidence-based information breeds ineffective, even harmful responses to HIV/AIDS…

"Prioritize large scale media, information, and education campaigns, tailored specifically to vulnerable groups, especially injecting drug users and their sexual partners." (UNDP, 2004)

Box 3
Characteristics of HIV positive persons in the 4 high risk countries

(UNAIDS, 2004)

1. 80% under the age of 30;

2. Most infections are occurring through contaminated needle use in intravenous drug users;

3. Women account for increasing share (33% in 2003, up from 24%);

4. Concerns raised about hidden epidemics among men who have sex with men.


"An effective response requires the ability and willingness of diverse social groups to work together in the face of this common challenge… Build real partnerships and cooperation with the private sector (especially media, pharmaceutical companies, and employers’ organizations), NGOs, and people living with HIV/AIDS. Make use of their experience and advice in formulating and implementing prevention and care policies." (UNDP, 2004)

Anecdotal evidence from Russia and CIS this last week reveals little public awareness of money available (from Global Fund, etc.) for AIDS treatment. Media reports on World AIDS day focused on the need for money rather than how to start using available resources (VC, personal communication, 2004).

Defining target groups and developing specific communication strategies to address them will be key. Target groups may be people with HIV/AIDS, policy makers, professionals, young people, the general public, etc.

Information Intermediaries: The most effective information intermediaries will be those people/media channels which are read/viewed/accessed and trusted by large numbers of target audience group. For example, public opinion polls repeatedly show that in public health policy area NGOs are most trusted, industry least, and doctors and scientists somewhere in between. Five key information intermediaries are media/journalists, NGO advocates, scientists/health professionals, government public information officers, and industry-based PR, advertising and risk communicators.

4. Framing

Question 4 – What is the dominant framing of HIV/AIDS issues and infected people? What opportunities exist for re-framing?

Understanding how HIV/AIDS issues are "framed" and perceived in the pilot cities will be crucial to the success of our campaign. "Framing" relates to the "spin", the way perceptions related to an issue are managed/manipulated. Frames create the context within which policy debate takes place. Simply put, if you get people asking the wrong questions the answers do not matter. For example, marketing people hired by the tobacco industry have been very successful in framing tobacco issues around freedom, autonomy and choice as opposed to public health. Key to the success of the Framework Convention on Tobacco Control was the ability of public health advocates to reframe the issue around public health concerns, e.g. Tobacco Kills Don't be Duped.

Different target groups may be working from different frames. Understanding dominant frames allows us to create appropriate messages.

Frame issue 1: Personal or Society issue?

One question to look at is whether people perceive the roots of this epidemic as structural issues of the economic/social situation or personal problems of individual behaviour. One of the fundamental contradictions in public health is that while we generally believe that basic social change is necessary to improve health status, most of our efforts focus on providing information/education or curative services.

We tend to avoid societal approaches as these are perceived as being too long-term, complex, "beyond our sector", unrealistic, and difficult to sell. With epidemics of this magnitude, however, the societal issues cannot be denied. Everyone knows this. If unacknowledged, trust is lost.

Box 4
UNDP developmental frames

  • A social issue: HIV/AIDS feeds on and exacerbates social marginalisation, poverty, stigma, and intolerance.
  • An economic issue: HIV/AIDS consumes scarce resources and attacks the human capital of workers who would otherwise provide the lion’s share of national labour forces, thereby reducing household, enterprise, and macroeconomic potential.
  • A health issue: a cofactor of other diseases, HIV/AIDS attacks the body's immune system with fatal consequences if untreated, reducing life expectancies and quality of life while straining public health systems.
  • A human rights issue: HIV/AIDS can generate responses that emphasise criminal justice solutions to what is essentially a public health problem. In addition to dis-regarding internationally accepted human rights principles, such responses can harm those most affected and be counter productive.
  • A policy coordination issue: while public health systems must be at the core of any response to HIV/AIDS, effective responses require coordinated engagement by many central and local government bodies.
  • A security issue: HIV/AIDS breeds insecurity at all levels, from individuals to households to countries. It also reduces the capacity of security organisations such as the military and police.
  • A policy horizon issue: because its consequences are delayed by its 'slow-onset' nature, AIDS blurs the distinction between today and tomorrow. Policy making must be shaken out of short term time horizons in order to respond effectively to the epidemic.

Frame issue 2: Limited solutions/harm reduction

Given the impossibility of finding an effective solution in the short term, can we reframe by focusing on limited solutions which will lead to harm reduction? As the majority of HIV/AIDS infection is through intravenous drug use, the Key Harm Reduction strategies suggested for drug use in the OSI Report (2004) are applicable here: needle and syringe exchange programs; substitution treatment; counseling and education; referrals for health care; safer injection rooms. This approach could be extended to cover other high risk behaviours.

Frame issue 3: Directives versus participation

A key challenge for health communicators is to avoid just telling people what to do and what not to do. Effective projects have been able to find ways to engage people in the process of their own change.

5. Values

Question 5 – With whom should we work? How can we ensure quality, reliability, and trustworthiness of partners/intermediaries?

"With the increasing pace of scientific research in an age of mounting hypochondria, health stories have become a major source of news – Big News. The enthusiasm of all types of media for carrying such stories is an asset in terms of increasing public awareness of health issues. However, it carries considerable dangers. Inaccurate reporting, which is becoming more prevalent as journalists yield to the pressures of deadlines engendered by new technology, can cause grave damage to individuals. Sensationalism, especially in the tabloid press concerned with little more than bottom-line profit, can lead to widespread misinformation." (Norris, 1999)

Yes to intermediaries, but with whom do we work? How do we avoid sensationalism and misinformation? Faced with a similar dilemma, the WHO European Health Communication Network (EHCN) developed a set of ten ethical guidelines for health communicators, which it used as a tool for screening would-be members. This code provides a framework of values and behaviour to which people can aspire and also be held accountable. Additionally, clear guidelines on cooperation with commercial enterprises, with detailed procedures to avoid conflicts of interest, will allow for transparency and clarity of cooperative agreements and ensure the independence of our information.


Box 5
EHCN guidelines for professional health correspondents (WHO,1999)

  • First, try to do no harm.
  • Get it right. Check your facts, even if deadlines are put at risk.
  • Do not raise false hopes. Be especially careful when reporting on claims for "miracle cures".
  • Beware of vested interests. Ask yourself who benefits from this story.
  • Never disclose a source of information imparted in confidence.
  • When dealing with individuals who may be sick or handicapped, and especially with children, be mindful of the consequences of your story. They will have to live with it long after you are gone.
  • Never intrude on private grief.
  • Respect the privacy of the sick, the handicapped and their families at all times.
  • Respect the feelings of the bereaved, especially when dealing with disasters. Close-up photography or television images of victims or their families should be avoided wherever possible.
  • If in doubt, leave it out.


6. Opportunism

Question 6 – Can the campaign link to any newsworthy days, meetings, workshops, report launches, etc. in your city or patch?

Much of the success of communication campaigns relates to externalities, outside events, which provide "teachable moments": when, because of a crisis, public outcry, newsworthy or other external event, our issue moves onto the centre of the stage. These are moments not to miss. Be ready to respond with well packaged information on both the problem and solution and know how to advocate through the media!
Media advocacy

"Advocacy is speaking up, drawing attention to an issue, winning the support of key constituencies in order to influence policies and spending, and bring about change. Successful advocates usually start by identifying the people they need to influence and planning the best ways to communicate with them. They do their homework on an issue and build a persuasive case. They organize networks and coalitions to create a groundswell of support that can influence key decision-makers. They work with the media to help communicate the message.

"Obviously, political protocol, media etiquette and social values vary widely from country to country: advocacy tactics that work in London might not be appropriate for Izhevsk." (WHO, 1999)

"The critical element of an effective media advocacy effort is that it is strategic. This means that you always need to assess your use of media in relation to and in support of, rather than instead of or isolated from, other approaches. Policy struggles are not easily nor quickly won, so community organizing is an important way to build support for your desired outcome and apply pressure on those whose decisions you are trying to change. You must assess various policy options and see which have the best chance of success in your political environment, and scout out potential allies and enemies in your effort." (Wallack et al, 1999)

Box 6
Checklist : Questions for Media Advocacy Development[i]

  • What is the problem?
  • What is the solution?
  • Who has the power to make the necessary change?
  • Who must be mobilized to apply pressure for change?
  • What message would convince those with the power to act for change?


The "benevolent cuckoo"

You can also try to position yourself in high visibility environments. Like the cuckoo, this means laying eggs in others' nests: running workshops in proximity to newsworthy events – enhancing these events by drawing more attention to them.

7. Levelling the Playing Field

Question 7 – How can we get the public health voice heard in loud, busy communication marketplaces? How can public health communicators get the skills and know-how?
Communication, especially that related to lifestyle issues, is often ignored and remains a weak area for public health advocates. Lack of skills, resources and poor channels of communication between information sources and media and private and public sectors make a bad situation worse. Government spokespeople, health professionals and NGO advocates, for example, do not generally have the marketing and advertising know-how and budgets used so effectively by the private sector. Potential partners are often unaware of what others are doing, mistrustful of each other's motives and proprietary about information.

Health communication has tended to focus on disease management issues, reflecting the medical dominance of research, investment and budget. Public health communicators operate, for the most part, on the margins of the settings where people's behaviours, perceptions and choices are being shaped.

Skill development is key. Additionally, reframing and opportunism can help to level the playing field. Policies which allow for free access to public service space and time and bans on advertising hazards (tobacco, alcohol, unsafe sex, etc.) can also help, as can EU standards, directives and legislation.

Box 7
Media Literacy (Kaiser Family Foundation, 2004)

Advocates of media literacy emphasize five basic principles for critical analysis of media messages:

  • Media messages are constructed.
  • Messages are representations of reality with embedded values and points of view.
  • Each form of media uses a unique set of rules to construct messages.
  • Individuals interpret media messages and create their own meaning based on personal experience.
  • Media are driven by profit within economic and political contexts.




Other levelling tools include investigative reporting and health impact assessments. Investigative reporting can uncover unjust, detrimental and corrupt practices. Health impact assessments can identify potential negative effects of policies.

8. Linking/Sharing Resources

Question 8 – How can we support and enhance each other's work, share learning, tools, resources?

Many of the groups represented at this meeting have developed communication capacities in their relevant information marketplaces. These capacities, however, are often mixed with organizational public relations needs. Issues often get "siloed" in this process, where organizations are looking for recognition of their own work in HIV/AIDS for funding or political reasons. This campaign aims to provide a common platform upon which all can stand.

How nice it would be to capture and confront our target audiences in the many different environments within which the networks represented here function. Messages with wake-up radio, pictures on breakfast cereal boxes, adverts in municipal public transport, public billboard space, newspaper features, pharmacy "ask about your medicine" point of sale campaigns, literature in GP surgeries, clinics and hospitals, ribbons and logos on sports teams, rock lyrics, football uniforms, schools and meeting places for young people, shopping mall displays, drug package inserts, pharmaceutical detail materials, youth web pages and games, free confidential screenings, needle exchange programmes, condom machines in bars, etc, etc, etc.

Furthermore, some of the groups here have made significant investment in the production of educational materials relevant to HIV/AIDS communication. These materials, e.g. films, brochures, posters, etc, too often have very short shelf lives and their utility beyond their immediate marketplace is minimal or nil. Where available, copyrights and royalty fees often put materials out of the reach of those who need them most. Most nationally based social marketing campaigns put very little thought and energy into packaging materials in a way that is user friendly in the global arena. This is certainly an area where we can learn a lot from the commercial sector – e.g. multiple language DVDs.

We need to find more creative ways to share resources and make information and other products available to those who need them. We could take a lead here from breakthroughs in antiretroviral availability. Can we not find ways to overcome patent rights on information sources and materials as well?

There are many ways in which we can help each other. For example, one of the reasons we don't know much about a lot of very creative and often outstanding interventions is that a lot of projects run out of steam by the time they get to evaluation, or they don't have a clue about it, or they have been so focused on the "doing" that the "sharing" of the findings gets lost along the way. We can help to acknowledge that and do something about it. At WHO we hired journalists to visit key projects and help to "write them up" to agreed specifications.

Another area is translation – there are plenty of good reports that are only done in a single language. The Healthy Cities Network has shown a great capacity to translate and disseminate useful documents like The Solid Facts booklet.

9. Taking action

Question 9 – How shall we get started? What is our message? What action do we take first? What milestones? What monitoring? What evaluation?

Involving people with AIDS and media from the start is key. Often these groups are brought in, if at all, only when campaigns falter. As one of my media friends puts it, "If you want us with you at the rocky landing, make sure we are in the cock-pit when you take off!"

Talk is cheap, but where's the action? In any communication strategy we need to come up with practical activities – something people can do, even if only symbolic, to move forward an agreed agenda.
Message development

"A crucial step in creating and assessing the effectiveness of … what message ideas or concepts have the best chance of 'connecting' with the target audience and influencing them to change behaviour … begins with using formative research and evaluation, a combination of techniques designed to help develop effective messages.

"Literature reviews, in‑depth interviews, and focus groups are examples of formative research tools that can be used to help determine if one concept is more salient to an audience segment than another, and which concepts should eventually be developed into specific messages. The general approach to pre-testing concepts is to share them with members of the target audience and gauge their reactions.

"Pre-testing is conducted while materials are in draft form, to allow changes to be made without great expense if testing reveals ways to improve the messages or materials. Methods of pre-testing include intercept interviews with members of the target audience and focus groups. Pre-testing helps determine whether the messages and formats are appropriate, understandable, clear, attention‑getting, credible, relevant, and have the desired effect (e.g. to raise awareness about an issue)." (AED, 1993)

10. Campaign logo


Question 10 – With what logo shall we brand this campaign?

A set of proposed logos is presented for review. Strategic guidelines on the use of the logo will be needed to maximize its utility and preserve its integrity.

Summary

The personal, political, social and economic commitment and will to circumscribe, prevent, and treat HIV/AIDS depends greatly on strengthening public health communication capacity. Effective public health communication must be evidence-based, ethical and credible. It must be able to package accurate, relevant and impartial information in ways that inform and stimulate healthy behaviour and policy action.

But information alone is not enough. It also calls for a health communication platform that can support people's understanding of the relevance of information and how to use that information to advantage: in essence, how to turn information into knowledge. "Knowledge is information that is embedded in a context, has a purpose and leads one to seek further information in order to better understand something about the world." (Zalinski, 2000) This health campaign, therefore, is also about understanding the context in which health and ill health occur and the social and political forces which drive it.

So our challenge here is not just about "aiming messages at people - telling people what to do and what not to do. Instead, it is much more about stimulating demand for accessible information and helping information mediators to support the public to understand, debate and come to its own conclusions ... to consider the public not as objects of change, but as agents of their own change." (Wallack et al, 1999)


[1] Users of this guide are encouraged to keep in mind that effective advocates often borrow successful ideas from others which they adapt creatively and apply to their own situation and campaigns. This consultation has "borrowed" lots – please pass it on!

[2] Relevant public opinion surveys should be identified and reviewed. Primary opinion research could be conducted among some of the key groups.



References


Academy for Educational Development (AED), 1993: Formative evaluation quoted in WHO European Health Communication Network Report, Chisinau 2000 (unpublished) http://www.aed.org/LeadershipandDemocracy/International/research.cfm

Kaiser Family Foundation, 2002: Media Literacy Guidelines. http://www.kff.org/entmedia/Media-Literacy.cfm

McKinsey et al, 2002: Learning from success: objectives, structures, and systems of effective international health alliances. Bill and Melinda Gates Foundation report. http://www.eldis.org/static/DOC11504.htm

Norris, W in Apfel, F (ed.), 1999: The pen is mighty as the surgeon's scalpel. London. Nuffield Trust

UNAIDS, 2004: AIDS Epidemic Update – Eastern and Central Europe (Chapter 6) http://www.unaids.org/wad2004/report.htm

UNDP, 2004: Reversing the Epidemic: Facts and Policy Options HIV/AIDS in Central and Eastern Europe and the CIS. http://www.undp.org/hiv/

WHO, 1999: TB Advocacy Guide. www.who.int/docstore/gtb/publications/TBAdvocacy/introduction.htm

Wallack, L, Woodruff, K, Dorfman, L, Diaz, I, 1999: News for a Change. An Advocate's guide to working with the Media. Sage Press.

Zalenski, C, 2002: Review of Publications and Documents in WHO EURO (unpublished)