Health data beyond borders, addressing fragmentation for refugees and others

In recent months, over 2,000 migrants in four European member states under particular migratory pressure have had their health data recorded as part of a groundbreaking joint initiative of the International Organization for Migration (IOM) IOM and the European Commission (EC) -Directorate General for Health and Food Safety (DG SANTE) that aims to address the health-related needs of this vulnerable cohort.

The Re-Health action aims to contribute to improving the capacity of EU Member States under particular migratory pressure to address the health-related issues of migrants arriving at key reception areas, while preventing and addressing possible communicable diseases and cross-border health events.

Re-Health was launched in February 2016 by the Migration Health Division of the IOM Regional office in Brussels. Ultimately the action aims at enhancing knowledge amongst stakeholders about refugees’ and migrants’ health needs; to ensure that migrant health assessment records are available at transit and destination countries; and to strengthen national and cross-border disease surveillance and response capacities. Central to this is the provision of an electronic personal health record (e-PHR), which will allow the systematic assessment of the health of arriving migrants and seeks to ensure that health assessment and preventive measures are provided to all.

The initiative has been praised as an example of true collaboration and cooperation between European member states. Yet the scale of this project is enormous, in terms of its scope and ambition, especially with the plan to expand to additional countries in the coming weeks. Here at the Alliance we know it is an ongoing challenge for different actors in maternal health - those seeking resources and those with something to offer – to find each other and collaborate on solutions.

As the maternal health landscape continues to be fragmented, applying this model will become increasingly crucial to solving the gaps in maternal health issues today. In a bid to foster a more efficient maternal health ecosystem, we are working to build the “Maternal Health Synapse” platform. This will act as a "marketplace" to help stakeholders within the maternal health ecosystem have an overview of all expertise and resources available.

We are seeking to develop an interconnected and dynamic repository of maternal health experts, activists, initiatives and resources that will function as a crowdsourced global community on maternal health. We believe this will enable close to real-time matching of urgent maternal health needs with solutions in one place, facilitating interaction with maternal health actors - those seeking and offering resources - at a local and global level. The goal is that the marketplace will also facilitate access to smart resources, innovators and problem-solvers, whether they are working independently, or within organizations.

As part of this innovative platform, we are thrilled to collaborate with IOM in the frame and continuation of the Re-Health initiative. We believe this is a groundbreaking project driven by digital data, which can have a significant impact on the health and wellbeing of migrants across Europe. Not only is the Re-Health project producing tangible results, it is also an example of how synergistic collaboration can drive the fight for maternal health equality.

The e-PHR pilot phase results from the implementing countries, Croatia, Greece, Italy and Slovenia, were presented recently at a conference in Brussels, attended by the Alliance for Maternal Health Equality and other stakeholders. Attendees heard that, to date, over 2050 e-PHRs (the IOM/European Commission universal tool for Health Assessment for migrants) have been collected. This solution can be scaled up and is already making an impact – indeed, the overall acceptance of the e-PHR by the migrants is 93%.

Ms. Roumyana Petrova-Benedict, IOM Senior Regional Migration Health Advisor for Europe, addressed the meeting; she spoke of the need to create a “migrant-sensitive health system” and highlighted the role of Europe in achieving the Sustainable Development Goals of the UN.

“When people think of the Sustainable Development Goals, they don’t necessarily think of Europe, but all countries must report on their progress in relation to the SDGs.”

At the Alliance for Maternal Health Equality, we believe this project has the potential to help towards ensuring all women get access to maternal healthcare by 2030, as stipulated in the SDGs. Currently, efforts to address this issue are fragmented across many individual projects that struggle to get sufficient visibility, secure resources, scale up and therefore make a sufficient impact. The Re-Health project has the power to transcend these difficulties and make a real difference.

Taking the project’s results to the next level is where it will become difficult, however. The demand for training is continuous, and extensive roll-out will require significant additional funding and resources. In addition, creating widespread awareness is critical to its success.

The Alliance has long advocated for an innovative multi-stakeholder partnership approach, which will combine culture shift, policy changes and new data-driven digital solutions. We all have different strengths to bring to the table. By working together, amazing outcomes are possible. The Alliance for Maternal Health Equality is therefore proud to work with IOM and other stakeholders to ensure the success of the Re-Health initiative.

 

Website: http://re-health.eea.iom.int/

 

Systematic thinking on maternal healthcare in Malta

At the Alliance for Maternal Health Equality, we believe that when it comes to maternal health, if we continue to have a fragmented approach, we will continue to get fragmented results.

Systematic thinking on maternal healthcare in MaltaThe ultimate goal of the Alliance is to deliver equity of access to quality maternal health at all levels, and a systematic approach to maternal health will be required in order to achieve this. High level meetings such as the recent Women in Parliaments Global Forum (WIP) Meeting in Malta on Maternal Health and Refugee Women represent a major opportunity to highlight our work with policy makers.

The meeting, which was organised by Women in Parliaments Global Forum together with MSD for Mothers, involved a group of carefully selected  stakeholders working together to address the issue of migrant and refugee women’s health and determine the concrete policy steps that EU institutions and national governments must take to ensure that every woman in Europe has equally high quality and affordable access to maternal healthcare.

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Continuing the work we did at the Women Deliver meeting last year, and then again within the context of the European Health Gastein Forum, the Alliance presented the matrix for maternal health assessment and the 5 dimensions: Person-centric approach; Timeliness and accessibility, equitability; Resilience and efficiency; Safety, quality and standards.Systematic thinking on maternal healthcare in Malta

The matrix was not only discussed at length, but its five dimensions and indicators were firmly endorsed by Vytenis Andriukaitis, EU Commissioner for Health and Food Safety, and also the President of Malta H.E. Marie-Louise Coleiro Preca. This endorsement is very exciting for the Alliance members, and is also a firm acknowledgment of the need for a structured approach to tackling the problem of maternal health equality and helping policy move forward.

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Prior to the meeting, our discussions were pre-empted by a visit to a local refugee camp, where people of all ages resided, having fled war in Syria and Iraq. Expecting a gulf in terms of culture and language, I found myself easily conversing with the people there in English about current affairs - discussing the current US President, for example. It struck me that these people could quite easily be my neighbours, yet a few hours later and mere miles away I would be in the Maltese Presidential Palace discussing their future.

refugees MaltaThe hardships that the refugees face are unimaginable - as well as an often perilous journey, refugee women at the camp told me that the trip is also accompanied by the constant threat of rape. While we have all read similar stories, being there and hearing them speak first-hand about systematic rapes and all sort of abuses is an eye opener I wish much more people could experience.

Malta refugees

The meeting concluded with a Joint Call to Action; President HE Coleiro Preca asserted that we must commit ourselves to developing respectful policies that target the diverse needs and requirements of pregnant and postnatal women, as well as refugee women, in credible and effective ways. Echoing our calls for a systematic approach, it was agreed that the EU should have a harmonised set of policies when it comes to maternal health. Crucially, it was also stated that the migration action plan of the EU must embrace the issue of maternal health for migrant and refugee women, while these women must also be active participants in the development of these policies.

The synergistic collaboration such as that achieved at last week’s WIP meeting enables the Alliance to take big steps forward in our ambitious plans to achieve equity of access to quality maternal health care. The entire maternal health ecosystem must be empowered in order to achieve tangible and sustainable results.

The endorsement and adoption of our matrix is just one step on our journey towards equality of access to quality maternal care across Europe. We now intend to use the five pillars and corresponding indicators of the matrix to assess the current state of maternal healthcare in different countries across Europe. This will allow us identify best practices, differences and gaps amongst the 27 EU member states, as well as potential champions at national level.

Measuring maternal healthcare in Europe

Inequity in terms of maternal healthcare is unfortunately a hallmark of health systems within the European context. For many women their specific healthcare needs have not even been acknowledged, let alone addressed, before , during and after their pregnancy. One in ten women has no access to maternal healthcare in the first months of pregnancy; in 2013 alone there were 1,900 maternal deaths in Europe. The lack of access to timely and quality healthcare for pregnant women, and the wider implications this has for the whole of society, can no longer be ignored. Across Europe there is a need for better and more comprehensive indicators to measure the standard of maternal healthcare.

The Alliance for Maternal Health Equality held a workshop during the recent European Health Gastein Forum with the aim of introducing a health systems performance measurement matrix focusing on several different but equally important aspects of maternal healthcare; the goal was to connect maternal health with the broader picture and relevant factors required for its performance evaluation. The session aimed to test and validate the suggested factors that were accumulated and proposed during the Alliance’s first 18 months of existence as well as the concerns and focus that we have noticed throughout our work with members and other organisations.

The session was attended by 55 participants from different sectors: industry, civil society and INGOs. The main speakers also played the role of moderators:

  •         Mervi Jokinen, President, European Midwives’ Association
  •         Ciara O’Rourke, MSD for Mothers Lead in Europe, Director – Public Policy (Europe & Canada)
  •         Ramazan Salman, Executive Director, Migrants for Migrants (MiMi), Germany
  •         Daniela Drandic, Head of Reproductive Rights Campaign, RODA
  •         Francois Fille, European Advocacy Coordinator, Doctors of the World International

Measuring maternal healthcare

While there is a different situation around maternal health in each country, the European Core Health Indicators (ECHI) exist with the goal of monitoring and comparing the situation in the EU and wider Europe. Yet, as the Alliance for Maternal Health Equality already outlined during a dinner held within the framework of Women Deliver 2016, only four of the ECHIs actually focus directly on maternal health, namely: mothers age distribution, fertility rate, perinatal mortality and low birth rate. These indicators also need to be more encompassing, as maternal health is dependent on other less obvious factors such as social determinants, rural versus urban divide, etc.

The workshop therefore provided a rare opportunity for various stakeholders within the policy community to sit down and have an open discussion around this issue. Solutions proposed by the attendees focused on a variety of practical measures and beliefs going forward. For example, it was proposed that healthcare national systems should strive to operate under common benchmark rules for maternal healthcare,and as part of the country’s individual health system. Current global efforts to combat maternal morbidity and lack of access must also focus on Europe, it was agreed. Also acknowledged was the perception of quality maternal healthcare as a privilege – the attendees agreed that a positive birthing experience is not an added value but a basic right.

The EU must exert greater influence on maternal healthcare and performance management, according to the attendees. There was also a consensus that Europe’s problems when it comes to maternal rights and healthcare are largely overlooked.

Finally it was agreed that national systems should operate under common benchmark rules when it comes to maternal healthcare, regardless of a country’s individual health system.

The Alliance for Maternal Health Equality now aims to introduce and test the format at the national level and to create a bridge between it and the existing European-level efforts. Going national is necessary in order to delve deeper into the problem and the different national specificities around it, especially in light of the nature of health as a national competence in the EU. This will also enable an enhanced understanding on the problem of inequity and lack of access, via first-hand, on-the-ground experience.

Ultimately the attendees agreed that equitable access to maternal healthcare must be considered as a top priority for Europe: a continent of increasingly diverse populations, facing many issues when it comes to the accessibility of its healthcare systems. It is our belief that maternal health must be seen as a crucial pillar when building resilient, effective and accessible healthcare systems.

Stand up for mothers! The Alliance speaks up at the European Parliament

On 29 September 2015, the Alliance for Maternal Health Equality organized a discussion with policy makers and experts at the European Parliament, as part of the first Safe Motherhood Week in Europe.

On 29 September 2015, the Alliance for Maternal Health Equality organized a discussion with policy makers and experts at the European Parliament, as part of the first Safe Motherhood Week in Europe.

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The Alliance stakeholders in the midst of the discussion

Your mother. She is your pillar. She knows what to do, always and in any situation. Somehow, she can fix any of your problems, go to work, manage a household and take care of the rest of the family, all at once. She was given the badge of motherhood, the second she had you. But with the great power of motherhood also comes great responsibility. And, somehow, the mother ends up being the last person to receive proper care and attention when it comes to health.

A lot of women do not receive proper healthcare before, during and after pregnancy, all crucial periods in their steps towards motherhood. The issue is just as valid for Europe, as it is for the rest of the world. Let’s face it: when it comes to safe motherhood, there is no more global North and global South divide: everywhere, mothers face difficulties, such as lack of information and access to healthcare.

Somehow, maternal health has remained off the radar in Europe, as it is considered to be more of a developing world problem. However, striking statistics show that it is time to urgently act together in order to bring maternal health rights back on the table and to empower mothers in Europe to embrace a happier, healthier maternity.

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The Safe Motherhood Week pin, representing a mother embracing and protecting a child, is the symbol of the movement

For the Alliance for Maternal Health Equality, this means calling on policy makers to ‘Deliver on Maternal Rights’ and our first step in achieving this was organizing a breakfast discussion on the topic at the European Parliament on 29 September 2015.

We aim to permanently change the EU discourse, making sure that policies on maternal health equity are improved and put into practice. With this in mind, our immediate next steps, following the successful event, include pushing for a Declaration on maternal health in the European Parliament.

 

Delivering on maternal rights

Participants included the European Parliamentarians Forum on Population & Development (EPF), the International Organization for Migration (IOM), Save the Children, European Commission, EuroHealthNet, the Platform for International Cooperation on Undocumented Migrants (PICUM)

The event brought together more than 35 policy experts on matters related to maternal health, proving that the issue has many faces: from health access and equity issues, gender equality and parental leave to immigration policy.

Together, we all spoke with one voice on the need for maternal health equity in Europe. The discussion was intense, with participants open and willing to share their own experiences, both personal and professional, when it comes to facing the issue of safe motherhood. Everyone found a common ground in the plethora of issues that mothers in Europe are facing. As Dr. Priya Agrawal from our founding member, MSD for Mothers underlined: ‘no woman should die giving life.’

 

Why Europe?

And yet, why do mothers continue facing health inequities and difficulties in Europe, the richest continent in the world, an example to many when it comes to healthcare? As the participants in the discussion outlined, there are a lot of reasons:

  • In an EU of 28 Member States (MS), healthcare continues being a national competence. This means no common, overarching EU legislation can exist in this field. We have differing health systems, standards and practices. This often means that, for example, a Romanian mother in Belgium needs to navigate through a labyrinth of different rules and regulations in order to get the healthcare she needs.
  • In addition to that, successes and failures of the healthcare systems in Europe are difficult to measure in terms of resilience and sustainability. A resilient healthcare system would be one that could also accommodate the ongoing, at times unexpected needs of an increasingly diverse population: an example is the current refugee crisis, with migrant mothers often facing dire conditions after their arrival in Europe.
  • Ultimately, as highlighted several times during the discussion, maternal equity is interconnected with a number of policy areas and needs to be proactively integrated into EU discourse on issues such as maternity leave, migration and healthcare alike.

 

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Dr. Priya Agrawal, MSD for Mothers, during the event

What next?

We all agree: mothers deserve the best possible healthcare. The 29 September event was the first step towards delivering a permanent change in Europe working together with our stakeholders to make it better: through smarter cooperation, focusing on what can be done already, and sharing best practices.

The discussion was an eye-opening experience that showed us that a lot more needs to be achieved and we are firmly headed in this direction. One thing is certain: we cannot remain indifferent anymore. Think about it: what if your mother had not been behind you all these years? As the Alliance for Maternal Health Equality, we intend to support all mothers, making sure their rights are in place. What about you?

Universal Access to Maternal Health and Sexual and Reproductive Health and Rights in Europe

Some of the best discussions are often held around the dinner table. A combination of a convivial atmosphere and a good guest list can make all the difference. A working dinner on maternal health hosted by the Alliance for Maternal Health Equality in partnership with the International Planned Parenthood Federation European Network (IPPF EN) and the European Parliamentary Forum on Population and Development (EPF), had exactly those ingredients.

Some of the best discussions are often held around the dinner table. A combination of a convivial atmosphere and a good guest list can make all the difference. A working dinner on maternal health hosted by the Alliance for Maternal Health Equality in partnership with the International Planned Parenthood Federation European Network (IPPF EN) and the European Parliamentary Forum on Population and Development (EPF), had exactly those ingredients. The result was energising.

Held during Women Deliver 2016, and in a residence formerly owned by the Royal Copenhagen Shooting Society (the Solyst), the setting was by no means typical! The evening turned out to be a very special moment where stakeholders , from policy makers, to CSOs and industry came together to make a commitment for the greater wellbeing of women in Europe. The evening was made even more special with the presence of Her Royal Highness Princess Sarah Zeid of Jordan who is a maternal and newborn health advocate.

The objective of event was to generate discussion on how to improve maternal health in Europe and implement the SDGs from a European perspective, with a view to generating concrete policy commitment. When it comes to maternal health, the divide between global North and South no longer exists. All women matter and deserve to have proper access to high quality maternal healthcare – including women in Europe.
Jacqueline Bowman-Busato is policy lead for the AMHE and set the context for the dinner discussions; “The level of discrepancy in Europe in relation to maternal health and Sexual and Reproductive Health and Rights (SRHR) is especially within the context of the Sustainable Development Goals and their enshrined universality: whatever is being implemented at the global level must also reach Europe. This is particularly valid in light of the different healthcare systems and standards that women have to access in each country in Europe.”

The outcomes of the dinner fed into the European Caucus held during Women Deliver and into a series of national-level events, currently being planned by the AMHE and its partners. Following the break-out groups during the Caucus, a more detailed commitment document is to be produced, with the inclusion of the Alliance points as well.

Dinner Discussion

A list of 6 questions were provided to guests in advance of the evening, and discussed during the dinner.

  1. What are the most important ways in which evidence based policies can level the playing field for maternal health and SRHR in Europe?
  2. What are the most important long-term benefits of putting in place harmonized indicators on a European scale, for access to maternal health and SRHR?
  3. How can we ensure that particularly vulnerable groups (migrants, minorities, disabled, underage mothers) are provided with equitable access to maternal health and SRHR in European health systems?
  4. How can we ensure universal access with 28 different healthcare systems in Europe?
  5. How can personalised care (continuity of care) help to achieve more equitable access to maternal healthcare before, during and after pregnancy?
  6. What are the most successful ways digital tools can facilitate access to high-quality maternal healthcare and SRHR?

There was general consensus during the dinner that to improve maternal health in Europe, there is a need for both data (indicators) and a register of experiences. Together they can be used to create truly efficient long-term policies that will be of benefit to women. It’s clear that discussions around indicators and standards are complex, but by using them to kick-start the political discussion, progress can be made.

In terms of caring for vulnerable minorities, monitoring is required to fully understand the obstacles that these groups are facing when trying to access services linked to maternal health. This needs to be considered within the context of Europe, where health remains a national competence.

Reference was made to the Safe Motherhood Week Survey on Pregnancy Perceptions launched earlier that same day which reveals significant access, care and information deficiencies in Europe. A vast majority of respondents experienced some sort of difficulty during their pregnancy ranging from perceived barriers to doctors or midwives, perceived impact on relationships (personal and professional), perceived discrimination in the workplace[1], and perceived appropriate access to information.

[1] 14% of all respondents have felt discriminated against in the workplace during their pregnancy and 34%, feel that their pregnancy or motherhood has prevented them from advancing in the workplace.

Ultimately, empowerment is key. Women need to be equipped and informed so that they can make the right choices and receive the right care. Giving women a central role in the decision making process will support universal and equitable access to high quality maternal healthcare and SRHR, as it was frequently mentioned during the conference itself.

Moving Forward

Safe Motherhood Week 2016 (26/09 - 03/10) is a major initiative on the maternal health calendar. Conclusions from the dinner discussion will feed into the agenda.

The European Health Forum Gastein will take place during Safe Motherhood Week 928/09 - 30/09). A session dedicated to maternal health entitled “Crossing borders: Maternal healthcare in Europe - Making it a Reality” will have 3 objectives;

  • Contribute to a roadmap to ensure equitable and universal access to maternal healthcare along the wellbeing continuum
  • Health systems performance measurement
  • The cross-border dimension – how access to maternal healthcare and health systems performance affects migrant and marginalised populations

The AMHE will be present at Gastein and will be contributing to the debate.

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