Event report HEART FAILURE IN THE MIDDLE EAST & NORTH AFRICA REGION A ROADMAP FOR POLICY ACTION. 26th November 2016 Park Rotana Hotel, Abu Dhabi

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Hotel, Abu Dhabi On the 26th of November 2016, leading

governments gathered to mark the launch of ground-breaking policy

Delegates discussed key findings from the report, and the policy

1 HEART FAILURE IN THE MIDDLE EAST & NORTH AFRICA REGION A ROADMAP FOR POLICY ACTION Event report 26th November 2016 Park Rotana Hotel, Abu Dhabi On the 26th of November 2016, leading clinicians, nurses, patient representatives, insurers and governments gathered to mark the launch of ground-breaking policy report on heart failure in the Middle East and North Africa. Delegates discussed key findings from the report, and the policy challenges faced across the region, before agreeing a joint Call to Action on Heart Failure.

From Left to Right: Delegates at the press briefing - Dr Kamal AlGhalayini (Saudi Arabia), Dr Feras Bader (United Arab Emirates), Dr Waleed AlHabeeb (Saudi Arabia), Dr Bassem Ibrahim (Egypt), Ms

3 From Left to Right: Delegates at the press briefing - Dr Kamal AlGhalayini (Saudi Arabia), Dr Feras Bader (United Arab Emirates), Dr Waleed AlHabeeb (Saudi Arabia), Dr Bassem Ibrahim (Egypt), Ms Angela Massouh (Lebanon), Ms Hend Soliman (Egypt), Mr Edward Harding (UK). About the Roadmap There are many specific and worrying patterns of heart failure (HF) and cardiovascular disease (CVD) in the Middle East and North Africa (MENA) region, creating unique policy challenges. Against this context, the Health Policy Partnership was supported by Novartis to conduct a situational analysis of HF in the MENA region, with particular focus on Saudi Arabia, Lebanon, Egypt, Qatar, Kuwait, Bahrain, the United Arab Emirates, Oman, and Jordan. The Roadmap summarises key economic and epidemiological data and highlights policy actions that may help reduce HF morbidity and mortality in the MENA region. Given the breadth of policy challenges identified in the Roadmap, and the unique circumstances in each country, the Roundtable event on the 26th November 2016 served to bring together key opinion leaders and identify common policy priorities to improve HF treatment and care in the region. Session 1: Why should heart failure be a policy priority in the Middle East and North Africa? The MENA region is at a critical junction for heart failure. There are still high rates of morbidity and mortality, placing a huge pressure on healthcare systems in every country. Basic components of heart failure care are an urgent priority. This includes comprehensive patient education, multidisciplinary teams to enable more specialist interventions, and better communication between healthcare professionals and patients, their families and the general public. Dr Feras Bader, Chairman of the Heart Failure Working Group of the Emirates Cardiac Society Session one outlined the unique challenges faced by the MENA region on HF, which include: One of the world s youngest populations of HF patients, yet similar mortality rates to other regions A higher burden of certain CVD and HF risk factors in the general population, driving current and future levels of HF High levels of multi-morbidity, increased re-hospitalisation rates and poor health outcomes for HF patients 1

4 Figure. 1 - Summary of MENA HF Roadmap s situational analysis and possible responses Situational Analysis Possible Policy Responses Policy and leadership Public and professional awareness of HF Health system readiness National plans for HF are rare Data is often inadequate and the HF burden may be unknown National plans for HF are rare Data is often inadequate and the HF burden may be unknown Suboptimal treatment practices are common Primary care is unready for HF Access to care is challenging, barriers include geography and workforce Embed HF as major condition in CVD strategies Expand data collation through national registries and gather economic data Embed HF as major condition in CVD strategies Expand data collation through national registries and gather economic data Initiate continual professional development Adopt national guidelines on HF Develop clear referral protocols Encourage multidisciplinary working Discussion Delegates discussed challenges related to lack of data and HF awareness across the region. Data collection is improving in many countries through the development of HF registries, however key challenges remain, including access to data (i.e. obtaining permission from ministries of health), and misconceptions that outcome data would serve as a criticism. Delegates agreed that a key and shared problem across the region was lack of representative data; of the existing studies, few were located in outpatient settings, with most focusing on acute populations. Additionally, delegates highlighted that economic data is an essential gateway to facilitating discussions with governments and ministries of health. Delegates also emphasised the need to raise public awareness for HF, and to learn from other successful campaigns in the region. One such example is breast cancer, where significant celebrity endorsement and media attention has led to greater prioritisation of the disease on the health policy agenda. In particular, it was felt that HF awareness campaigns needed customised messages to differentiate HF from other cardiovascular diseases, and bring people s stories to the centre of attention. Interview with Mrs Hend Soliman, Egyptian Association for the Care of Heart Failure Patients The diagnosis of heart failure is life changing for the patient, but also their whole family. Without better support, it is too much for an average family. Mrs Hend Soliman, Egyptian Association for the Care of Heart Failure Patients Mrs Hend Soliman, a representative of HF patients, gave her views on the challenges patients face in achieving a timely and accurate diagnosis. She noted that both the general public and physicians have poor understanding of the condition and may underestimate its severity, greatly delaying diagnosis. However, it is upon diagnosis that patients and their families encounter significant challenges, psychologically, socially and financially. Better support networks, clear points of contact and improved HF education will greatly improve quality of life for HF patients in the MENA region. 2

5 Sessions 2 and 3: The patient journey through the healthcare system In sessions 2 and 3, delegates discussed HF care and treatment in the MENA region. Ed Harding and Christine Merkel from the Health Policy Partnership, presented a summary of findings from the Roadmap across key areas of the care pathway (see Figure 2). Figure 2 - Situational analysis of HF care and possible responses from the Roadmap Area Prevention Diagnosis Care in hospital Follow-up Self-management Situational Analysis The incidence and prevalence of HF is set to increase due to high burden of risk factors Significant delays to diagnosis exist on presentation advanced disease stage is common Many HF patients are not managed by specialists, which may result in sub-optimal care Few patients have structured follow up in the community Comprehensive education and support to enable self-management is lacking Possible Policy Responses Develop targeted and sustained policies for awareness raising and prevention Screening programmes for high risk groups Tackle barriers in access to HF specialists Develop comprehensive referral processes National guidelines informed by national data Streamline referrals to HF cardiology specialists Incentivise greater HF specialisation Establish structured discharge plans with clear points of contact for and with patients Expand nurse and pharmacist role to provide patient education and support in hospital and in the community Raise awareness of HF in primary care Presentation by Dr Feras Bader, Chairman of the Heart Failure Working Group of the Emirates Cardiac Society. Dr Bader discussed the need for comprehensive patient education and more specialist interventions. He also outlined challenges in current hospital-based models of care and the many pressures placed upon cardiology wards. Multidisciplinary teams, and nurses in particular, were discussed as having a key role to play in HF in all MENA countries. Discussion Discussions in sessions 2 and 3 spanned many topics, which are summarised below: The development and use of performance indicators - Many experts noted the importance of incentivising best practice through the use of performance indicators. However, it was also recognised that indicators must be developed and used in conjunction with other data to gain a fuller picture of HF care in all settings. We need to incentivise hospitals to provide better heart failure management. Currently hospitals have no incentives to monitor and improve care. Pay for performance on key selected indicators in heart failure may be a way forward. Dr Waleed Al Habeeb, President of the Saudi Heart Failure Working Group 3

6 Comprehensive care after hospital discharge - Delegates discussed difficulties in monitoring patients after discharge. Infrastructure is often lacking outside of specialist centres and, as a result, patients can get 'lost' in the healthcare system. It was agreed that improving monitoring and care in the community may help prevent unnecessary hospitalisations. We need to track and monitor patients better post-discharge from hospital education and support are necessary for patients to understand their heart failure and follow their management plan carefully. Dr Kamal Alghalayini, Associate Professor and Consultant Cardiologist, King Abdulaziz University Hospital Discharge planning and links between primary and tertiary care - Delegates noted the importance of clear discharge plans to improve continuity of care. Dr Bassem Ibrahim spoke of the need to expand specialist HF clinics for ongoing management of HF, and several delegates noted the great potential of these clinics and the attraction of touring HF clinics. There is enormous potential across the MENA region to expand the reach of specialist heart failure centres across the country. Specialist heart failure care in every town may not be possible, but clinics can reach more heart failure patients and train primary care professions via hub and spoke models, and even through the use of touring units that go out beyond major cities to smaller communities. Dr Prashanth Panduranga, Senior Consultant Cardiologist, National Heart Center, Oman Potential of HF specialist nursing roles at all levels - Delegates agreed that the expansion of nursing roles will be essential in future. Nurses often play an important role in helping to monitor patients, and often have more time to develop strong and supportive relationships with those living with HF. Heart failure affects all aspects of patients' lives and as nurses we must support and motivate them to adapt to the condition. Helping patients to build small but sustainable changes into daily life may bring significant improvements to their heart failure status in the long term. Angela Massouh, Clinical Nurse Specialist, American University of Beirut Supporting Self-Management - Enabling patients to self-manage many aspects of their day-to-day care was noted as a key opportunity for improvement in the MENA region. This includes better patient therapeutic education, monitoring and discharge planning. Ms Angela Massouh also described how motivating families to build changes into their daily lives is essential to supporting HF patients, but this must occur in a culturally sensitive manner. Several delegates mentioned that pharmacists have potential for an expanded role in supporting HF patients post-discharge. With improved training and reimbursement, they may be able to be a key point of contact for questions about medicines and to improve understanding about HF. Care post-discharge is like an iceberg without the proper support and contacts, much of what goes on is unknown. We must enable heart failure patients to improve their quality of life and keep them actively engaged in own their care in partnership with their cardiologist. Dr Bassem Ibrahim, Director of Heart Failure Unit, National Heart Institute, Egypt 4

Session 4: Making heart failure a policy priority - A call to action In the final session, delegates reflected on the overarching challenges, and what was required to move the HF conversations and

7 Session 4: Making heart failure a policy priority - A call to action In the final session, delegates reflected on the overarching challenges, and what was required to move the HF conversations and policy forward. Accepting the unique needs of each country, delegates agreed there was value in a common list of policy goals representing shared priorities and a consensus for action in the region. The delegates identified the need for urgent action as follows: 1. To put HF 'on the map', raise awareness and educate all stakeholder groups Lead, in conjunction with governments, large-scale public awareness campaigns proportionate to the scale of the disease, including both traditional and social media Educate patients & high-risk individuals to drive lifestyle and behaviour changes Improve healthcare practitioners' knowledge of heart failure, including symptom recognition and referral processes 2. Better integration of primary care and in-hospital care Establish comprehensive heart failure disease management programs led by multidisciplinary teams, implementing discharge protocols, continuous monitoring and developing leading roles for nurse specialists where possible Improve the tracking of patients post-discharge, with clear points of contact for patients Foster links between specialized heart failure centres, and primary and community care Strengthen supportive roles in the heart failure healthcare team, for example nurses and pharmacists Personalize care and support to each heart failure patient 3. Improve measurement and data Demonstrate the positive cost impact of integrated heart failure care models Review key performance indicators and incentives for hospitals to improve standards of care Most importantly the MENA Heart Failure Roadmap calls on policy makers to establish comprehensive national cardiovascular disease and heart failure strategies. These strategies are to be developed in partnership with professional societies, public sector, private sector, and industry, and should provide for: Investment in national data including costs and epidemiological data, Governments leading public awareness campaigns on heart failure, Investment in heart failure disease management programmes and integrated care models, including the training of heart failure support roles. 5

In 2012, the Regional Committee passed a

Strengthening health systems for universal health coverage In 2012, the Regional Committee passed a resolution endorsing a proposed roadmap on strengthening health systems as a strategic priority, as well