Review the six guiding principles of the Advocacy Code of Ethics and discuss how the principles relate to what you will do as a health science pr

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1PART 2 ‘ THE FULL EDITION’

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This Promoting Health Advocacy Guide for Health Professionals is published as an annex to the WHCA Health Literacy Action Guide

edited by Carinne Allinson and Franklin Apfel.

© 2010 by World Health Communication Associates Ltd. ISBN 978-1-907620-00-3

Published by World Health Communication Associates Ltd

Copyright for the text © 2008 by ICN – International Council of Nurses, 3 place Jean-Marteau, 1201 Geneva, Switzerland

ISBN 978-92-95065-30-7

All rights, including translation into other languages, reserved. No part of this publication may be reproduced in print, by photostatic

means or in any other manner, or stored in a retrieval system, or transmitted in any form, or sold without the express written

permission of the International Council of Nurses. Short excerpts (under 300 words) may be reproduced without authorisation, on

condition that the source is indicated. Requests for permission should be directed to International Council of Nurses, 3 place Jean-Marteau, 1201 Geneva, Switzerland and/ or World Health

Communication Associates, Little Harborne, Church Lane, Compton Bishop, Axbridge, Somerset, BS26 2HD, UK. World Health

Communication Associates is UK limited company no. 5054838 registered at this address; e-mail: [email protected];

tel/fax (+44) (0) 1934 732353.

© Cover and layout design by Tuuli Sauren, INSPIRIT International Communications/WHCA, Brussels, Belgium.

Printed by Edition & Imprimerie on recycled, chlorine-free paper with vegetable-based ink.

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TABLE OF CONTENTS

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ACKNOWLEDGEMENTS

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ACKNOWLEDGEMENTS

2008 edition ICN would like to acknowledge Franklin Apfel, the publication’s main contributor, for his hard work and the Global Health Workforce Alliance for its support in funding this document.

2010 edition WHCA would like to thank ICN for permission to reprint this manual as an annex to its Health Literacy Action Guide. It would also like to acknowledge the contributions of Mike Jempson of the Mediawise Trust UK for permission to use material previously developed for the WHCA Working with the Media Action Guide and Scott Ratzan of Johnson and Johnson for permission to include the Glossary materials.

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INTRODUCTION “Teaching ourselves and patients to use anti-retrovirals is doable as long as we have a

reliable supply of quality a!ordable drugs” Zambian Nurse

“Teaching our children to cross the street safely is "ne but slowing tra#c by their school would really reduce the risk of accidents” Hungarian physiotherapist

“Moving patients out of the hospital to the community is great as long as there are facilities and services available there”

Australian doctor All of us have ideas and concerns about how we might do things di!erently, and better, on our wards, and in our hospitals and communities. All of us have our “wish lists” of policies, programmes and levels of funding that could lead to better health for our patients1 and communities. Health advocacy is an individual and collective approach that health professionals can use to turn these ideas into generalised realities and to create positive health and social change.

A DEFINITION OF ADVOCAC Y Blending science, ethics and politics, advocacy is self-initiated, evidence- based, strategic action that health professionals can take to help transform systems and improve the environments and policies which shape their patients’ behaviours and choices, and ultimately their health.

The health professions see advocacy as a core competence of professional practice, alongside scienti"c knowledge, clinical and inter-personal skills. Although many good examples of e!ective health professional advocacy exist, we see health advocacy, particularly as it relates to in#uencing institutional, community, national and international policies, as an under-developed skill area in need of urgent strengthening.

Whether you are a nurse, pharmacist, physician, dentist, physiotherapist, manager, or any other health professional, this guide aims to provide you with a practical advocacy action framework that you can use in your daily work.

1 The term patient is used throughout as a shorthand for service users, clients and other people receiv ing services from health professionals.

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Section 1 provides an ethical rationale for action and identi"es key global health trends driving the need and opportunities for strengthened health professional advocacy.

Section 2 identi"es ten “action steps”which you can adapt to your own issues and contexts.

In Section 3, speci"c advocacy skills and processes are described in more detail. These approaches can and have been used by health professionals in a wide variety of settings to enhance their own personal development, stand up for and with their patients, strengthen their professions, and facilitate policy change at institutional, community, regional, national and international levels.

POLIC Y CHANGE!THE SYSTEM"LEVEL FOCUS Health professional advocacy2 can be applied at personal/professional,3 patient4 and policy change/system levels. While action in all these areas is needed, this guide speci"cally focuses on how to argue for/promote policy change at a ‘systems’ level. Such ‘systems’include any institution, community, citizen group, association or agency, governmental or non-governmental, public or private, national or international, with which health professionals work, that can, through their policies and power, in#uence public health and health care systems. Strong health professional advocacy is critical in these policy arenas, not only to make the systems work better, particularly

2 The term ‘advocacy’, particularly in the sense in which it is used throughout this document, may not translate directly into some languages and several words may be needed to capture the sense of the English word. The advocacy focused on in this guide is not legal advocacy, i.e. pleading for another person in court or upholding the legal or human rights of one or a group of clients at their request (Wheeler 2000; Mallik 1998).

3 On a personal and professional level, health professionals can advocate for their rights as workers and for appropriate recognition of their contributions within their institutional community and envi- ronments. This could include trade union considerations, opportunities for training, participation in the decision-making processes, and a host of other issues.

4 Working for and with their more vulnerable patients/clients/service users and their carers, particu- larly when people in care are incapacitated or have a mental illness that a!ects their judgement, health professionals can advocate for fair and appropriate care and services. This type of direct patient advocacy necessitates that the health professional be respectful and knowledgeable of relevant ethi- cal and legal implications of such third party representation; in particular, health professionals must weigh their duty of care against the autonomy of the person in care. Moreover, concerns have been raised about the lack of training and system support o!ered to health professionals in relation to their roles as patient advocates. (Teasdale, in Wheeler 2000)

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for vulnerable populations, but also to counteract the e!orts of interest groups that stand to lose from the implementation of good public health practice.

A NOTE OF CAUTION The recommendations in this guide focus on advocacy approaches in democratic countries. ‘Advocacy’ assumes that people have rights and that these rights are enforceable; for example, the right to voice opinions openly and to organise, as well as the right to adequate health care, pollution-free environments, employment and housing. Advocacy often focuses on ensuring that these rights are exercised, respected and addressed. The approaches detailed in Section 3 are potentially e!ective only in political environments where: • policy-makers can be in#uenced by public opinion; and/or • governments can and do take action to protect the rights of their citizens; and/

or • there is an open and free media through which people can express themselves/

"nd a voice (Sen 1990).

Where these public freedoms do not exist, the most e!ective way of changing policy may not be through direct advocacy. It may require action from outside the country, from international agencies, and from actual and potential economic partners, e.g. as during apartheid in South Africa (Sida 2005). Health professionals advocating for change in undemocratic environments may be putting themselves at risk and are advised to take a strategic, long-term perspective and, where possible, strengthen links with appropriate international advocacy groups.

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SECTION 1 Ethics, Advocacy and Global Trends

The ethical basis for health professional advocacy is articulated and enshrined in many international and national professional association codes.

The ICN code (2002), for example, states that “the nurse shares with society the responsibility for initiating and supporting action to meet the health and

social needs of the public, in particular those of vulnerable populations.” The General Medical Council in the UK (2002) states that physicians must work

to “protect and promote the health of patients and the public.”

Other national codes speci"cally call for health professionals to recognise the need to address organisational, social, economic and political factors in#uencing health and to advocate for appropriate health policies and decision-making procedures that are consistent with current knowledge and practice, for fairness and inclusiveness in health resource allocation, including policies and programmes addressing determinants of health (CNA 2002).

The UN Universal Declaration of Human Rights states that “everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.” (UN 1948)

These ethical guidelines provide strong moral and political platforms, instruments and rationales for health policy advocacy action.

GLOBAL TRENDS The rationale for such advocacy action is further fuelled by a number of signi"cant contextual factors that are reshaping the health care landscape, albeit unevenly, around the world. Taken as a whole, these trends serve as a powerful driving force for change and provide unprecedented opportunities for health professional advocacy.

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GLOBAL TRENDS!SUMMARY • Health reforms and growing inequalities in health • Changing patterns of illness and the aging of societies • New global health threats • Health workforce imbalances • Functional health illiteracy • Better ways of measuring social determinants of health • Telecommunication advances • Globalization of risk promotion • Advocacy successes • Health sector leadership and global governance

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World Health Professions Alliance (WHPA) campaigns. For example this patient safety initiative warning on the dangers of counterfeit drugs

provides a strong platform for advocacy action by health professionals at global, regional, national and local levels.

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Global trends driving the need for strengthened health professional advocacy include: 1. Health reforms and growing inequalities in health The adoption of a business approach to health reform, guided by e$ciency

outcome measures, has often led to a re-orientation of priorities. Economic values inherent in an industrial and/or for-pro"t approach have in many places replaced fundamental commitment to access and care for many vulnerable persons, e.g. the poor, elderly and unemployed. Health professional advocacy is needed to ensure access, care and fairness.

2. Changing patterns of illness and the aging of societies According to the World Health Organization (2005), chronic diseases currently

account for more than half of the global disease burden in both developed and developing countries. This shift has spurred several international health professional associations to call for major changes in training and practice to develop the skills required to meet these new challenges.

3. New global health threats Globally perceived health threats of climate change, the in#uenza pandemic,

the emergence and re-emergence of infectious diseases and anti-microbial resistance have put public health more ‘centre-stage’ on world security agendas. This has led to new and signi"cant public and private funding and investment and has opened high-level political doors to health advocates and public health values.

4. Health workforce imbalances National and international agencies and associations now acknowledge that

e!orts aimed at addressing the Millennium Development Goals and other global health challenges will have only limited impact in the absence of adequate human resources. Addressing workforce shortages and imbalances within and between countries, whether due to economics, working conditions, security issues, training, migration or other causes, requires strengthened health professional advocacy.

5. Functional health illiteracy As health systems become more complex, patients are experiencing increasing

di$culties in ‘navigating’ through health care systems. Functional health illiteracy is associated with premature death, prolonged hospital stays, poorer

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health and increased health system costs. All health systems require stronger policies which make access to information and requisite education more fairly available.

6. Better ways of measuring social determinants of health Evidence has, for a long time, pointed to the important in#uence of social

and economic determinants of health. New epidemiological methodologies can now provide quantitative feedback on the impact of system-level/policy interventions aimed at addressing key determinants of health. Hitherto these interventions have received little health system attention and funding because they were considered to be poorly measurable and outside the direct in#uence of health and social care.

7. Telecommunication advances The internet, mobile phones and other telecommunication advances allow

for instant local-global linkages, and cost-e!ective information transfer and intelligence gathering. These technological changes, albeit unevenly distributed, create new opportunities for local, national and international advocacy.

8. Globalization of risk promotion Choices, perceptions and behaviours are shaped by the health information

marketplaces within which people and policy-makers work, play and live. These marketplaces are all too often dominated by global economic and political interests, such as the tobacco, high density food and arms industries, whose advertising and marketing have a negative impact upon public health through the direct promotion of lethal or health-compromising products, the glamorising of risky behaviours, and the ‘normalisation’ of hazard use in every facet of modern life. The negative health messages and in#uence of these global forces are best challenged by knowledgeable, credible, reliable and independent health advocacy.

9. Advocacy successes Advocates around the world have demonstrated their ability to catalyse change

on every level. Advocacy of one form or another has been central to all public application of medical and health research over the last centuries. Successful campaigns for sanitation, #uoridation, seat belts, or no smoking in public places, have demonstrated the value of sustained advocacy and provide inspiration and guidance for those tackling new public health challenges.

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10. Health professional leadership and global governance Health professionals, by virtue of their scienti"c knowledge, practical clinical

experience in a wide variety of settings, and their perceived trustworthiness, are well positioned to provide leadership in health policy debates.

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Each year on 12 May, International Nurses Day, the ICN identi"es a key issue and provides a global platform for its member associations and other agencies to raise awareness and advocate for policy action on designated

topics. Such annual events allow for better planning, coordination and impact of communication initiatives. The theme for 2010 focuses on the role

of nurses in addressing the epidemic of chronic diseases in all countries.

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SECTION 2 A Framework for System-level Health Advocacy

A 10"STEP ADVOCAC Y FRAMEWORK

A 10"STEP ADVOCAC Y FRAMEWORK Advocacy is about:

1. Taking action—overcoming obstacles to action; 2. Selecting your issue—identifying and drawing attention to an issue; 3. Understanding your political context—identifying the key people you

need to in#uence; 4. Building your evidence base—doing your homework on the issue and

mapping the potential roles of relevant players; 5. Engaging others—winning the support of key individuals/organisations; 6. Developing strategic plans—collectively identifying goals and objectives

and best ways to achieve them; 7. Communicating messages and implementing plans—delivering your

messages and counteracting the e!orts of opposing interest groups; 8. Seizing opportunities—timing interventions and actions for maximum

impact; 9. Being accountable—monitoring and evaluating process and impact; and 10. Taking a developmental approach—building sustainable capacity

throughout the process.

Step 1: Advocacy is about taking action E!ective advocacy requires health professionals to take the initiative. You are most often moved to act and react when you see unfair, unjust, unhealthy environments, practices and funding decisions.

Many factors in#uence your ‘action competence’—a term coined by the WHO in relation to the reticence of people in post-Soviet Eastern Europe to take the initiative in the expectation that they must await orders from above. (Denham 2002)

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This NGO-sponsored climate change initiative aims to engage health professionals as advocates, utilize their collective authority to in$uence

policy makers and ensure that health impact is a primary consideration in climate-related policy development.

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It is an attitude re#ected elsewhere in the perception of a role con#ict between advocacy and professional duties—for example, since advocacy often involves in#uencing government policy, government-funded health workers may feel it is inappropriate to engage in advocacy.

Of course, governments may seek to limit criticism through structural or contractual impediments—for example, by outlawing advocacy by agencies wishing to retain the charitable status needed to attract tax-deductible donations.

Ask any group of individuals why they are not taking action about issues that concern them and the typical answers will include the problem is “too big”, “not my responsibility”, “outside the area of my competence”, “not worth my time”, “it won’t do any good”, “too risky/dangerous”, “not professional” and “I wouldn’t know where to start”.5

All of these rationales for inaction have one thing in common: they stem from a negative ‘framing’of advocacy. Framing, itself a core advocacy skill (see Section 3), is all about the way people choose to represent and so in#uence perceptions of a topic.

By ‘reframing’ advocacy as a necessary core competence and responsibility of all health professionals, this guide provides a way forward. It shifts the focus from debates about “Why advocacy?” to the question “How?”. The challenge now becomes to learn ways of overcoming perceived and real obstacles to advocacy and to implement this core responsibility.

Many possible roles There are a wide variety of ways in which health professionals may engage in system-level advocacy work, including a representative role (speaking for people), an accompanying role (speaking with people), an empowering role (enabling people to speak for themselves), a mediating role (facilitating communication between people), a modelling role (demonstrating practice to people and policy-makers), a negotiating role (bargaining with those in power), and a networking role (building coalitions). This may be achieved by working with hospital or community-based groups, their professional associations, or with other health care related interest groups (Gordon 2002).

5 The answers here are from informal surveys among student professionals and churchgoers in the UK.

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Step 2: Advocacy is about selecting your issue Once you have decided to act, you will need to select an issue or problem you want to tackle. In looking at various options, you should consider applying a set of criteria to issues that concern you.

The fact that something is a big problem is not su$cient to make it a good candidate for advocacy action. A variety of contextual factors will a!ect topic choice; for example, knowledge of a reasonable solution for the problem. Developing a set of selection criteria is often helpful (see Advocacy Tip 1 below).

Health professionals new to advocacy often look for ‘low-hanging fruit’ issues that can be addressed relatively quickly and result in a success for the group to build upon. In any case, your choice should honestly re#ect the reality of your policy environment, resources, time, potential allies and opponents and level of working.

ADVOCAC Y TIP 1!SELECTING AN ISSUE Criteria for selecting a particular issue might include the following:

– Will a solution to this problem or issue result in a real improvement in people’s lives?

– Is this an issue or problem we think we can resolve? – Is this an issue or problem which is fairly easily understood? – Can we tackle this issue or problem with the resources available to us? – Is this an issue that will attract support or divide us?

(ICASO 1999, reprinted 2002)

Step 3: Advocacy is about understanding your political context Conventional/received wisdom among health care providers is that there are two things one shouldn’t talk about with patients: politics and religion.

Many health care professionals feel that health services are and should be apolitical. They feel that acting/talking politically is not consistent with their professional codes and may serve to compromise their provider–patient relationships. People who have su!ered from repressive regimes, violent con#ict and other kinds of political instability often fear politics. In more mature democracies, apathy and the

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perception that politics is only for the wealthy and powerful can be equally stubborn barriers to getting involved in advocacy.

This guide sees politics a bit di!erently. Many of the factors which shape peoples’ choices and behaviours and, ultimately, their health, are determined in political chambers, far removed from clinical settings. In#uencing the debates and decisions within these ‘chambers’ is at the core of advocacy. Too often, political decision-making and resources are concentrated in the hands of a powerful few, while excluding many voices and interests, such as those of ethnic minorities, women, small businesses, trade unions and peasants.

Advocates can assist patients and service users, especially those from disadvantaged groups, to receive more public recognition for their problems, as well as more equitable distribution of resources and opportunities to solve these problems.

Again, the challenge becomes “How” to in#uence decisions in political arenas, not “Why?” Before we can formulate an advocacy plan to change a policy, we need to know how the policy process works (see Advocacy Tip 2). Understanding how decisions are made and enforced will often help us to identify who needs to be in#uenced and in which direction.

Di#erent styles Health professionals, in approaching advocacy work, can take one of two basic political approaches: they can take a condemnatory approach or a collaborative, encouraging approach. In practice, advocacy combines the two to a greater or lesser extent: for example, highlighting the inadequacies of speci"c policies or practices and also suggesting alternatives that would have more desirable e!ects. Content, style and method of delivery will vary between and within organisations (and advocates) according to issue and circumstances. Most importantly, each health professional will need to "nd a model that best suits their nature and their understanding of the challenges they face (adapted from Sida 2005, p5).

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ADVOCAC Y TIP 2!ANALYSING YOUR POLITICAL PROCESS Who decides: administrators, managers, managing directors, chief nursing or medical o$cers, legislators, heads of state, appointed o$cials, policy-makers, judges, ministers, boards of advisors, etc.

What is decided: work plans, laws, policies, priorities, regulations, services, programmes, institutions, budgets, statements, party platforms, appointments, etc. How decisions are made: accessibility of citizens to information and the decision- making process, extent and mechanisms of consultation with various stakeholders, accountability and responsiveness of decision-makers to citizens and other stakeholders, etc. How decisions are enforced, implemented, and evaluated: ensuring accountability so that decisions are put into action, laws enforced equitably, etc.

VeneKlasen & Miller 2002, p23

Step 4: Advocacy is about building your evidence base Successful advocacy requires the gathering of ‘evidence’, which includes both scienti- "c issue-related knowledge and data on the ‘information marketplace’ within which your activities will take place.

Issue-related evidence should include local, national and international impact data (comparatives and league tables are often very helpful), known interventions (solutions) and their evaluation, past e!orts and outcomes, obstacles to action, etc.

‘Information marketplaces’ are the arenas within which advocacy communications take place. Here, evidence needs to be gathered as to how the issue is being discussed, what images, metaphors, language and frames (see Section 3) are being applied, by whom (spokespeople) and to whom (target audience). One useful way of learning about your information marketplace is to do a media audit (see Advocacy Tip 3).

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ADVOCAC Y TIP 3! MEDIA AUDITS : A CHECKLIST 1 Is your issue being covered by the print and broadcast media? 2 If not, are other issues receiving attention that could be linked to your issue? 3 What are the main themes, arguments, images, metaphors presented on

various sides of the issue? 4 Who is reporting on your issue or stories related to it? 5 Who are appearing as spokespeople on your issue? Who are appearing as

opponents to your issue? 6 Who is writing op-ed pieces or letters to the editor on your issue? 7 Are any solutions presented to the problem? 8 Who is named or implied as having responsibility for solving the problem? Is

your target named in the coverage? 9 What stories, facts, or perspectives could help improve the case for your side? 10 What’s missing from the news coverage of your issue?

(Apfel 2003)

Know your supporters and opponents (and their arguments) E!ective planning for any advocacy activity requires knowledge and understanding of both supporters and opponents. Stakeholder analysis is one method of gleaning this information (see Advocacy Tip 4) (see Glossary for de"nition of stakeholders).

Knowing how to address ‘the other side of the story’ or counter what your opponents are saying is often critical to success. Advocates need to anticipate the reaction of adversaries and continuously improve and reformulate arguments and counterarguments about their particular issue to account for new developments (Wallack et al 1993).

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ADVOCAC Y TIP 4!STAKEHOLDER ANALYSIS Stakeholder analysis is the technique used to identify the key people and organisations that have an interest or activity relevant to your issue. The "rst step in stakeholder analysis is to identify who these stakeholders are. The next step is to work out their power, in#uence and interest. The "nal step is to develop a good understanding of the most important stakeholders so that you know how they are likely to respond, and so that you can work out how to win their support or counter their opposition. Many people develop a stakeholder map to keep track of the various players and changes over time.

(Mindtools n.d.)

Advocacy based on inaccurate information or false claims is unethical, potentially injurious to public health and a wasted e!ort. Even the best-intentioned and valid campaign can be undermined by opponents if it relies upon faulty data (Chapman 2007). Always double check information and source it properly. It is better not to rely upon data that is genuinely open to a variety of interpretations, but always be ready to challenge claims by opponents with the arguments that support the aims of your campaign.

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