European Kidney Health Alliance Advocacy Guidance Toolkit for national organisations to advocate for improved access to kidney care in Europe July 2015 FOR INTERNAL USE ONLY.
Contents 1. Introduction 3 1.1. Advocacy Toolkit: why do we need it? 1.2. What is advocacy and why is it important? 2. European Kidney Health Alliance 4 2.1. Mission and Objectives 2.2. Members of EKHA 2.3. The MEP Group for Kidney Health 3. Advocacy Activity at National Level 5 3.1. Target audience/stakeholders, policy hooks, events and opportunities for engagement 3.1.1 Stakeholder Mapping 3.1.2 Policy Audit 3.1.3 Events and opportunities for engagement 3.2. What is the challenge in your country? Making a road map 8 3.2.1 Key Messages/Matching your message with your audience 3.2.2. Alliance / Partnership building 3.3. Creating the campaign 8 3.3.1. Policy target groups 3.3.2. Working with patient groups 3.3.3. Government outreach guidelines 3.3.4. Parliamentary activities guidelines 4. EKHA Recommendations for Sustainable Kidney Care 12 4.1 What is it? 4.2 Summary of the EKHA Recommendations 4.2.1. Recommendation cluster 1: Prevention and early detection 4.2.2. Recommendation cluster 2: Choice of treatment 4.2.3. Recommendation cluster 3: Increasing access to transplantation 4.2.4. Recommendation cluster 4: Treatment reimbursement strategies Annexes EKHA Recommendations for Sustainable Kidney Care EKHA CKD backgrounder EKHA Infographic on the Burden of CKD in Europe Draft Letter to policy-makers about national commitments for kidney health 2
1. Introduction 1.1. Advocacy Toolkit: why do we need it? This Toolkit is intended to help national kidney organisations in Europe plan integrated advocacy activities designed to drive awareness and prioritisation of kidney health among key stakeholders (policy, professional, patients and public) in their local markets. This toolkit provides strategic and tactical advocacy guidance and a suite of adaptable tools that EKHA has developed to enable its member organisations to plan and implement an advocacy programme at national level. 1.2. What is advocacy and why is it important? Advocacy can be defined as the deliberate process, based on demonstrated evidence, to directly and indirectly influence decision-makers, stakeholders and relevant audiences to support and implement actions that contribute to improving patients lives. 1 Health advocacy aims to bring about change in institutional policy and practice, public opinion and behaviour, and public health priorities. This can be achieved using a variety of channels, including conferences, summits and symposia, stakeholder meetings (e.g. between government and civil society or patient organisations), parliamentary debates and other political events, spokespeople, press conferences and news coverage. What do we aim to achieve with advocacy: Raise awareness of chronic kidney disease (CKD) and its impact on patients, health services and economies in Europe Recommend strategies to improve CKD detection and management within the context of health policy development at European and national levels. These strategies are based on the latest scientific evidence and insights from experts and patients, and takes account of the range of current and future health policy initiatives relevant to chronic disease Encourage and facilitate collaboration between the individuals and groups involved in the prevention and management of chronic disease, including health policy-makers, healthcare providers, payers, patients, care-givers and industry. 1 UNICEF. Advocacy Toolkit. A guide to influencing decisions that improve patient s lives. New York; United Nations Children s Fund (UNICEF), 2010 3
2. European Kidney Health Alliance (EKHA) 2.1. Mission and Objectives EKHA is an alliance of not-for-profit organisations who represent the key stakeholders in kidney health issues in Europe. EKHA takes a multidisciplinary approach involving patients and their families, doctors and nurses, researchers and other healthcare professionals who work cooperatively for a European health environment in which there is a sustained decrease in kidney disease and its consequences. EKHA works on the principle that the issue of kidney health and disease must be considered at European level and that both the European Commission and European Parliament have vital roles to play in assisting national governments with these challenges. EKHA articulates its mission around five fundamental objectives: Raising awareness of the importance of kidney health and of the need for action to improve the early detection of chronic kidney disease so that preventative strategies can be introduced to minimize its consequences. Promoting a uniformly high standard of care for those with kidney disease throughout Europe by developing consistent strategies for educating and training throughout the EU. Supporting the development of novel strategies and therapeutic approaches for the detection and management of kidney disease through research and its translation into clinical practice. Cooperating with EU health organisations addressing areas linked to kidney disease. Facilitating exchange of information between the European Kidney Community, the EU institutions and organisations in charge of health policy throughout the EU. 2.2. EKHA Members EKHA Full Members are the founding members of the Alliance: International Federation of Kidney Foundations (IFKF) European Kidney Patients Federation (EKPF) European Renal Association European Dialysis and Transplant Association (ERA- EDTA) European Dialysis and Transplant Nurses Association European Renal Care Association (EDTNA/ERCA) EKHA Associate Members are National and other European not-for-profit kidney related organisations: German Society of Nephrology Spanish Society of Nephrology 4
The Renal Association UK Italian Society of Nephrology Turkish Society of Nephrology The Dialysis, Nephrology and Kidney Transplantation Union of Georgia Slovenian Society of Nephrology Society of Nephrology, Dialysis and Transplantation of Bosnia and Herzegovina Portuguese Society of Nephrology Estonian Society of Nephrology Société Francophone de Dialyse Fundación Española de Diálisis Dutch Kidney-Patient Association (NVN) 2.3. The MEP Group for Kidney Health EKHA gathers the MEP Group for Kidney Health as a forum for important issues surrounding kidney health to be discussed at EU level. It brings together experts from the kidney community and European policymakers to discuss key topics and activities related to kidney health. In this way, MEPs receive valuable information relevant to their current work and are better able to hold the European Commission to account as it drafts new proposals that impinge of kidney health. The MEP Group meets once to twice yearly for concise and focused meetings. Members of the MEP Group are: Karin Kadenbach, (Austria, S&D) CHAIR Christel Schaldemose (Denmark, S&D) Linda McAvan (UK, S&D) Miroslav Mikolasik (Slovakia, EPP) Peter Liese (Germany, EPP) Sirpa Pietikäinen (Finland, EPP) Aldo Patriciello (Italy, EPP) Glenis Willmott (UK, S&D) Mark Demesmaeker (Belgium, ECR) 3. Advocacy Activity at National Level 3.1 Target audience/stakeholders, policy hooks, events & opportunities for engagement Advocacy should be based on a clear understanding of the key challenges and unmet needs in your country. In addition, it will be important to identify upfront what relevant policy 5
streams and initiatives exist which may serve as a vehicle for change. They may also provide a focal point for your advocacy efforts. 3.1.1 Stakeholder Mapping The first step for a national advocacy programme is an audit of the key national stakeholders and their representative organisations, together with the challenges, unmet needs and priorities of these groups. European stakeholders EKHA aims to cooperate with EU health organisations to address areas of common interest linked to kidney disease. Facilitating exchange of information between the European kidney and chronic disease communities, the EU institutions and organisations in charge of health policy throughout the EU Patient advocacy groups European professional societies/organisations European Commission officials Members of European Parliament (MEPs) EU Member States Representations National stakeholders The ultimate aim is to cascade the European-level recommendations to national stakeholders in order to stimulate local debate on kidney health and eventually influence the creation of country-specific policies and actions. To this end, you should consider outreach to: National organisations of patients and professionals Health system managers Public health bodies Health ministry officials Members of Parliament (MPs). 3.1.2 Policy Audit Advocacy can be used to positively shape the healthcare environment by engaging in the policy debate. However, it is important to first understand which policies are in place at both the EU and national level, and how they can and do influence the field chronic disease in general and kidney disease in particular. It is equally important to understand how the EU institutions, your national government and health authorities function, and what the decision-making timeline is for each relevant policy opportunity. 6
A first step is to determine whether your country has a national chronic disease prevention strategy or an organ donation and transplantation action plan as per the 2012 European Council conclusions on Organ Donation and Transplantation and the EU Action Plan on Organ Donation and Transplantation (2009-2015) to structure actions within national health systems and to improve cooperation between Member States. The following link will help you check if your country does indeed have a national plan together with other useful information on European organ donation networks and policy: http://ec.europa.eu/health/blood_tissues_organs/docs/midtermreview_actionplan_organ_en.pdf An audit of all relevant EU and national policy initiatives should be undertaken to produce a map of opportunities. It is important to consider all relevant political work streams, campaigns and initiatives that: a) Are relevant to kidney health care delivery b) Provide useful hooks for promoting your message c) Offer opportunities to provide expert input. Policy areas of importance include: Kidney disease Chronic diseases Rare diseases Cross-border healthcare Access to medicines Innovation in care Health inequalities Health technology assessment Research programmes/agendas 3.1.3 Events and opportunities for engagement An excellent way to harness existing momentum for building awareness and solidifying a community around kidney and chronic disease issues is use the occasion of an event that already has a high profile or which gathers some of your key stakeholders. Some ideas include: World Kidney Day annual, the second Thursday in March European Kidney Forum annual EKHA event - Spring European Transplant Sport Championships 2016 http://etdsf.org/angol/5- games/2016-vantaa/vantaa-2016-etdsc.pdf EKPF events - http://www.ekpf.eu/ International Federation of Kidney Foundations (IFKF) events - http://www.ifkf.org/ Events of national patient groups or foundations Events of national medical organisations (nephrology, organ donation and transplantation). 7
3.2 What is the challenge in your country? Making a Road Map 3.2.1 Key Messages/Matching your message with your audience Advocacy should be targeted toward clear goals, delivered using key messages, and assessed using appropriate markers of success. You can use the key messages and target audiences included in this tool kit to guide the development of your national and local advocacy plans. It is important to link the right message with the target audience to have the greatest chance of success. These core messages should be tailored to reflect the local reality of kidney health in your country and the fundamental challenges that need to be solved. Such messages should be supported where possible by the latest local data and examples. Try to ensure that the messaging used in any correspondence links to current national political goals/concerns or on-going policy debates. Try to use similar language to that used by your targeted audience. 3.2.2. Alliance / Partnership building Engagement with other health stakeholders is crucial to build partnerships that can communicate a strong and united message to governments. This collaboration is important to build support for your national-level action. Key steps for successful partnerships building Contact relevant health stakeholders in your country, identified by the stakeholder mapping exercise. Seek an initial meeting to understand their objectives and plans, and to share your goals and ideas Agree on areas of mutual interests where you could work collaboratively in pursuit of shared goals Identify and agree on key national and regional government officials and other health influencers to target. 3.3 Creating your campaign 3.3.1. Policy target groups Below is a list of institutions responsible for health policy with whom you might consider engaging with, both independently and in partnership with other stakeholders. Together, you should aim to leverage the key recommendations to drive change in prevention, early detection diagnosis, assessment and management of ADPKD: National Health Ministry, kidney disease chronic disease or organ donation, transplantation responsible officials National/regional health authority, kidney disease chronic disease or organ donation, transplantation responsible officials 8
National institute of public health, kidney disease chronic disease or organ donation, transplantation responsible officials National Members of Parliament interested/responsible for health MEPs. The list is available at: http://www.europarl.europa.eu/meps/en/fulllist.html;jsessionid=c58b0d2f5fe3f28256c3ac7752c2a3c2.node2 MEPs specifically involved in the chronic diseases and kidney health debate e.g.: MEP Group on Kidney Health http://www.ekha.eu/htmldocs/ekha/4-17/ekha/mep_group_kidney_health.html Representatives from the European Commission Health and Consumer Directorate (DG SANCO). National regulators, HTA agencies and budget-holders 3.3.2. Working with other stakeholder groups on shared goals Patient groups are an essential part of the stakeholder mix and have an increasingly strong share of voice and influence with media, policy makers and the public. Therefore it is essential to include a representative or representatives from appropriate groups in your coalitions and alliances. Understand where your objectives overlap with the objectives of your partners. Once you have mapped all relevant stakeholders and your network, you can determine where you have common interests, and whom you should approach. Successful collaborations are those that focus on areas of mutual interest. It s okay if you are coming to the table from different aspects of an issue, as long as the a differences are understood and the common ground agreed. Be sure to keep your ultimate aim in mind. It will then be important to determine who are the right partners for each of your objectives. Identifying potential activities you could develop in partnership Below is a selection of examples of projects or activities on which you might consider partnering with a patient group: Surveys Providing funding to enable a patient group to commission a survey can be an effective way to gather data, highlight an unmet need or capture patient experiences or views. The outputs of a survey can be used to form the basis of a media campaign and/or a campaign to influence policy. Case studies Consider working with groups to provide testimonies to articulate patient experiences and carer insights. 9
A good patient case study illustrates the human face, day-to-day realities and psycho-social toll of a disease or medical condition. It is one of the most powerful ways of getting your message across to your key audiences. Media and speaker skills training Some groups may welcome the opportunity to have media training and/or speaker training as this gives them an opportunity to improve their skills and to develop their key messages. Educational and information materials Consider building a partnership between patient group and physician group to produce educational materials to help promote awareness and educate patients and family members about CKD. Visual case studies Patient photographs and short statements can be used on exhibition panels that can be used at parliamentary events, conferences, congresses and meetings. They can also be used in reports and other documents to show the human face of kidney disease. Newsletters and websites Patient group websites and periodic newsletters are a good way to keep information flowing to the patient group s members and promote the value of the patient group s mission and the success of their actions. Audiences for the websites and newsletters can include, but are not limited to: o Patients o Caregivers o Families of patients o Policy-makers and government officials o Healthcare providers. 3.3.3. Government outreach guidelines The following steps can be undertaken when planning an outreach programme towards government officials: Step 1: Undertake preliminary research and understanding of relevant policy priorities and programmes (stakeholder and policy mapping) Step 2: Define kidney health objectives in your country (prevention, screening, increase organ availability, etc.) Step 3: Gather facts and figures on CKD prevalence, burden of illness, care pathways Step 4: Identify allies and decision-maker target list Step 5: Define your key messages based on latest date, facts and figures Step 6: Identify types of activities you can suggest to decision-makers to aid awareness. 3.3.4. Parliamentary activities guidelines Parliaments are directly elected by citizens and therefore constitute a strong vehicle to strive for better healthcare services and address disease-specific issues. In particular, the European Parliament has always been critical to the fight against chronic conditions and is seen today 10
as an important voice on disease-specific causes. Your national Parliament should therefore be considered as a central player and a platform to raise awareness of kidney health, to put it higher on the health agenda nationally, and to put pressure on the government to take action. How to table Parliamentary questions Parliamentary questions are tools that can be used by MPs to seek information or to push for action. They oblige ministers to explain and defend the work, policy decisions and actions of their departments. Parliamentary questions should therefore be used as a tool to drive further debate on kidney disease or rare disease and point at existing gaps in assessment and access to treatment. When encouraging an MP to table questions, these steps should be followed: Target MPs who are likely to be interested in kidney health (e.g. MPs in the health committee or who have a medical background this can be found by checking their CVs, which are usually available on Parliament websites) Draft a letter to the targeted MPs presenting your organisation, subject of your request and issue you would like to present Request a meeting with the MPs to further brief them about the burden of disease and the impact on patients and society Following a successful meeting, the MPs will either draft the question, or ask you to prepare a first draft question for his/her consideration You should be aware of specific rules and deadlines applying to the submission (or tabling) of Parliamentary questions, which may be found on the Parliament webpage. Hold a Policy Roundtable or Parliamentary Event in collaboration with key stakeholders A policy roundtable is a platform for discussion and exchange of information on a subject of interest. Most on-going roundtables meet for example once a year, each time with a different topic with an overarching aim of improving a situation and / or environment by tackling key challenges as they arise. The prestige and level of the round table of course depends on the balanced choice of participants. Policy roundtables aim at slowly shaping certain priorities and beliefs held by decision-makers and society with the view to gather consensus around a specifc issue. Topics could be built around key reccomendations and will serve to fuel the debate on: Improving understanding of the CKD burden amongst the public Improving access to diagnosis, care and treatment Development of a nationally co-ordinated, tiered approach to chronic disease in collaboration with experts, patient advocacy groups and other stakeholders Advancing care through innovation. The following steps can be undertaken when planning a Policy Roundtable or Parliamentary Event in collaboration with key stakeholders Step 1: Determine the best stakeholders to partner with for the event 11
Step 2: Work together to develop the topic and key messages of your event Step 3: Secure a host MP (if the event is to be held in Parliament) who has shown interest in kidney health, chronic disease or organ donation and transplantation. Step 4: Determine what type of event fits your purpose? E.g. o Parliament event/conference o Press briefing o MP lunch/dinner o On-line discussion or other activity. 4. EKHA Recommendations for Sustainable Kidney Care 4.1 What is it? The EKHA Recommendations for Sustainable Kidney Care were launched in 2015 to propose solutions for the challenges of CKD in Europe through effective prevention and a more efficient pathway intended to facilitate the provision of appropriate and affordable treatment to all Europeans equally, while promoting the highest quality of care. It is meant to be used by EKHA members and national kidney organisations to inform national governments and policy makers on the best way to tackle the rising problem of kidney disease. To do this, collaborative efforts which draw upon the patient s experience and expertise as well as medical knowledge are required to address deeply entrenched problems with the planning and delivery of RRT services. These Recommendations can be considered a Call to Action, to call on decision-makers to implement more efficient prevention and treatment protocols to help reduce the predicted tide of new cases of kidney failure needing costly and invasive RRT in years to come. 4.2 Summary of the EKHA Recommendations 4.2.1. Recommendation cluster 1: Prevention and early detection This Recommendation cluster is based on the necessity to move the healthcare system from principally treatment-focused, to prevention focus. Currently 97% of healthcare funding goes to treatment with a mere 3% going to prevention. With evidence showing that even a small increase in this effort could result in significant health gains and reduce future health costs, there is a necessity for a paradigm shift. Following primary prevention, early detection programmes should be implemented. These programmes should target high-risk individuals, and once detected CKD appropriate therapeutic measures should be implemented to slow or stop the disease (secondary prevention). Catching the disease early allows for better and more effective treatment which will save our health systems money in the long run. 4.2.2. Recommendation cluster 2: Choice of treatment 12
The EU should support Member States to share and implement best practices which encourage increasing availability of home care for kidney patients. This has many benefits including cost: in the United States, home dialysis has been shown to save payers between US$7612 and US$12,403. Home dialysis also allows patients to travel less which in turn lets them return to or stay in work. A large portion of patients who reach end-stage kidney disease may choose not to receive dialysis or transplantation. These patients should have access to a supportive non-dialysis, non-transplantation care pathway (also referred to as conservative care). The conservative care should include information and palliative, patient-centred care for the patients and their families to optimise their well-being during the end-stage period. 4.2.3. Recommendation cluster 3: Increasing access to transplantation Transplantation is the treatment of choice for end-stage kidney disease in suitable patients. This is in part because it often results in a better clinical outcome than dialysis and substantially reduces the healthcare costs of CKD by avoiding or delaying dialysis and allowing patients to resume activities, including work. Increasing organ donation is a critical component of ongoing efforts to increase kidney transplantation in Member States. While culture plays a major role in this issue, Member States that implement a policy for opting-out from donation achieve much more kidney donations/transplantations than those that have a policy of opting-in. 4.2.4. Recommendation cluster 4: Treatment reimbursement strategies EKHA maintains that all therapies with proven efficacy should be accessible to all patients throughout Europe, irrespective of financial means or social status. In order to safe-guard this right, a better distribution of healthcare spending and cost savings is required. Member States should favour reimbursement strategies that incentives fair access and distribution of care modalities, correct implementation of conservative care, the start of patient cantered RRT at the correct point in the course of CKD, and technological and social innovation of treatment modalities. Annexes EKHA Recommendations for Sustainable Kidney Care EKHA CKD backgrounder EKHA Infographic on the Burden of CKD in Europe Draft Letter to policy-makers about national commitments for kidney health 13