Geetika Kejriwal

MEVo is a method for champions (Healthcare Professionals within the Local Maternity System) to facilitate dialogue with South Asian mothers to record, collect evidence and embed the voice of the mothers in the transformation process locally using a stage based guided set of tools supported by the MEVo platform.

Collaborators : Hyunjin Jo, Soobin Song

Supporter : Benash Nazmeen

MEVo - AN INTRODUCTION

MEVo is developed with the vision to reduce the maternal inequalities faced by the South Asian Women in the UK. The main goals include understanding and embedding the voice of the South Asian Mothers using a self run and iterative framework for system innovation. MEVo aims to be adopted by Royal College of Midwives and National Maternity Voices to enable their practitioners; Midwives, Maternity Voice partnership chairs and others within the Local Maternity Systems to embed the voice of the mothers in the service improvement, development and evaluation processes leading to transformation of maternity services locally. MEVo provides a stage based method that is actionable, seamless and guided along each step of the process by the platform, with easy to implement tools that are culturally sensitive. The MEVo platform publishes the use cases of the method to collate a library of good practices that can inspire practitioners across the country. 

THE CONTEXT

Women from Asian backgrounds experience a two-fold difference in maternal mortality and almost 64% higher stillbirths and neonatal deaths as compared to white women, emphasising the need to address these disparities. Antenatal education offered by the NHS directly and indirectly affects these outcomes as it helps mothers to prepare emotionally, mentally and physically. South Asian women have lower rates of access to antenatal education leading to missed opportunities for preparation, lower rates of care satisfaction and unplanned births, increasing trauma, complications and in worse case scenarios mortality for mothers or babies. We mapped the barriers into individual capacities, interpersonal relationship, community, service delivery ecosystem and socio-political context. Understanding their cultural context of South Asian Women we defined the point of entry in the service delivery ecosystem with the aim to improve the care by designing and delivering services that are accessible and relevant to the local context and lived realities.

STAKEHOLDER PROBLEMS

Within the Local Maternity System, responsible for designing and delivering services to the population, we identified key stakeholders whose role is vital in embedding the service user needs, who we identified as champions. 

Let’s meet the champions and understand their barriers for embedding the voice of service users.

1. Meera, the Cultural Liaison Midwife at Alperton, feels overwhelmed and doesn’t know where to start. She is also frustrated with service user voice coming in as an afterthought and not being fully integrated from the beginning. 
2. Jessica,  the Head of Midwifery in Alperton and aims to complete the department’s strategic goals and improve the maternal outcomes. She feels that the higher management is often inhibited to involve the service users. 
3. Fionna, local MVP Chair and does not have the skills and tools to conduct a co-production session with users while also being scared of cultural insensitivity when engaging with the users.

WHAT IS MEVo?

Mevo’s 7 stages include :

1. Stage 1 the objective is to introduce the method to champions through a website leveraging on live examples and e-modules.
2. Stage 2 - The objective is to build capabilities, planning, approvals and creating the network of HCP and south asian mothers.
3. Stage 3 provides tools to create dialogue between HCP and South Asian mothers to understand both sides of the story, record evidence and create ideas of plausible solutions. 
4. Stage 4 provides tools for the self-reflection by the HCP, to collate the qualitative data and plan the changes that can deliver better care. 
5. Stage 5 focuses addressing the changes using the recorded evidence to embed the voice of the users.
6. Stage 6 is about sharing the changes with the HCP and mothers to build trust, responsibility and relations.
7. Stage 7 focuses on creating a library of good practices that can inspire other champions across the UK.

MEVo IN PRACTISE

In collaboration with Benash Nazmeen, Cultural Liaison Midwife at Bolton we have tested MEVo and run virtual workshops with her and South Asian Mothers to understand the usability of tools for initiating dialogue, collecting evidence and analysing the data. Through the multiple sessions we were able to build and test the tools to fit within the seven stages of MEVo. 

Over the next few months we wish to run the pilot at Bolton BL3 hub, set up meetings with RCM and NMV for collaboration and reach out to more champions to endorse MEVo. Simultaneously we will work on expanding the tools to cover more communities by adding relevant images, languages and scenarios. Finally, build the library of good practises, which is the most important outcome for Mevo as it highlights what’s working and also inspires more people around.

BENEFITS & IMPACT OF MEVo

Through MEVo, South Asian Mothers get a safe space to express their needs and opinions and in turn get the opportunity to access services that help them prepare better for their maternal journeys.Through tools of MEVo, Meera (our champion) is able to understand the needs of the mothers and build a qualitative data set that can inform the plan for the department. Over time MEVo enables building capacities to deliver user centred care at a local level aided by evidence along the different timelines of the pregnancy journey. Mevo indirectly informs personal practise,  cultural competency and highlights the good practices within the department, giving an insight into how to leverage that further.

The NHS will be able to increase access to responsive care along with an increase in antenatal education attendance, in the long run MEVo aims to reduce the insurance costs in maternity. 

A special thanks to Benash Nazmeen and her colleagues who have supported us through the project. We are also indebted to all the women who have supported us, from the streets of Alperton, Church Street and virtually who have poured their heart out to us and shared their emotional maternity journey for our project. Our project is an ode to women from Ethnic Minorities who go through the troubles of life and bring a newborn child to this world. From women, for women and by women.Thank you!

Collaborators : Hyunjin Jo, Soobin Song

GeneMate provides a safe space for patients at different stages of the genetic journey. It matches patients to people nearby who are experienced and provides access to a community who are there to listen, share stories, offer practical tips, emotional support and create bonds. 

Project Partner : NHS Imperial Healthcare trust

Collaborators : Hyunjin Jo, Li Ning and Yasuhiro Yamauchi

Beyond the Genetic test pathway

Genetic Testing detects gene mutations that cause rare diseases, inherited cancer and other genetic conditions. Within the long term plan, the NHS aims to make genomics part of routine care to provide preventative and personalised healthcare to the citizens of the UK . However, the test revealing a mutation is a life altering moment for the patient and continues to affect the family for generations to come.During this journey, the patient and their family face a lot of uncertainty and anxiety. They have to make life-changing decisions in the present as well as for the future leaving them with a lot of questions. This project focuses on this key moment in the genetic journey and aims to help inform the next necessary steps for patients and family members. 

The complexities of the Genetic Journey 

Genetic test is just a starting point on a long and complex journey. The preventative surgeries and follow-ups can sometimes continue on for years. Some patients already have cancer and do a genetic test to determine a mutation and while some patients undergo predictive tests as someone in their family tested positive. The levels of complexity vary from each person depending on their age, gender, type of mutation and even the life stage they are at, so information needs to be highly tailored and specific. Interestingly, people are not only looking for medical support but also for everyday practical information and emotional support from experienced patients. While market analysis showed that medical professionals provide medical information and charities provide practical generic information, we saw an opportunity to provide both practical and emotional support to patients and family members that is tailored to individuals at different stages. 

Designing for and with the stakeholders  

Since genetic testing and the journey beyond is a sensitive subject, we used co-design as the strategy to formulate a solution fit for the key stakeholders involved : the patients, the family members and the genetic counsellors. Our co-design participants continuously collaborated to build solutions step by step and eventually helped us validate our ideas, as well as  work on the loopholes. The prototype sessions helped us to create an efficient way to connect with individuals and groups, matching parameters for the connection, as well as to create a confidentiality agreement to reduce the risk of sharing private medical information. Spending time in understanding our users also inspired us to create an incentive to join back to the service as a mate, while also addressing questions about data sharing & privacy.

NHS GeneMate in action  

NHS GeneMate has 3 main features, Genemate matches you with individuals and groups with the same experience. You can choose from specific parameters depending on your needs and life stages. Matching helps to build intimate connections and get stage-appropriate advice to avoid unnecessary confusion. Secondly with GeneMate, you get a chance to chat with individuals and groups, about your questions and issues and simultaneously build close bonds with experienced patients. Thirdly, you can join back as a mate to connect, create groups and help more people like you by sharing your story, fears and successes.

Small actions, Big Impact 

GeneMate provides benefits for patients, family members, and the NHS. Social prescribing will enable the patients to feel prepared by informing them about what to expect before medical appointments. NHS will benefit from this as it will result in reduction of burden and time for NHS medical staff. With GeneMate, patients and family members feel supported mentally and emotionally throughout their journey by experienced patients. NHS will benefit from this as the cost of mental health problems of hereditary cancer patients and their relatives might reduce. GeneMate provides practical tips to help people navigate the journey. We estimate it will increase awareness and user engagement, aligning with the plan to make genetics part of routine care. Additionally, GeneMate will aid in developing a niche community that will help in building trust among the people taking the test. NHS will benefit from this as awareness and engagement increases within the UK. 

The Road ahead  

As of now GeneMate is a pilot that helps patients and family members of Hereditary Breast and Ovarian Cancer syndrome. Looking at the potential impact, GeneMate will grow to cover all patients and family members of all types of hereditary cancer soon and eventually to all genetic conditions within the UK.

Special Thanks : 

Demetra Georgiou, our partner at Genomic Medicine, Imperial College Healthcare Trust and the North West Thames Regional Genetics Service for guiding us through the project. Thanks to all the experts, oncologists, GPs and charities who added to our knowledge. Special mention for all our participants who have been so open, shared their life stories with us and collaborated with us on our project.

Project Partner : NHS Imperial Healthcare Trust

Collaborators : Hyunjin Jo, Li Ning and Yasuhiro Yamauchi