Exclusive interview with Dr Ava Easton, Chair of B I Global's Patient & Public Involvement Panel
(added 13th May 2019)
We sat down with Dr Ava Easton to discuss her role as Chair of the Patient & Public Involvement Panel for the Brain Infections Global project. Dr Easton is also Chief Executive of the Encephalitis Society and you can follow her on Twitter: @encephalitisava
Q: What is the role of the PPIP within the Brain Infections Global Study?
A: The role of the Patient & Public Involvement panel is to ensure that the study outcomes are related to patient benefit, in this case reducing death and disability for those suffering from brain infections. In particular, the panel will be joining in-country meetings and will liaise outside of these meetings virtually and via email. Some of the activities the panel might be involved in include:
- Providing a patient or public perspective on discussions; - Responding to written or verbal communication about the study between meetings; - Exploring and gathering feedback from patients/families in our respective organisations; - Providing feedback on study materials and information; - Helping with dissemination of study findings and any new materials/information for public policy and practice.
Q: Why is patient & public engagement so crucial for a study of this nature?
A: The Patient & Public Involvement Panel is a multi-disciplinary team that includes patients, family members, and professionals acting as patient advocates, each bringing different perspectives, experience and knowledge to the study. The group has an external overview and can bring perspectives that complement the professionals and researchers at the heart of the study. We want research to be informed by inclusion and a diversity of experience and insight so that it leads to treatments and services which reflect the needs of patients and the public. We also deliver better research when we work together, embracing and respecting differing perspectives. Sometimes as researchers we can be so entrenched in the work we do that we can forget the basics or what might be important to patients and their families. Often patient and family members can provide insight into what is important to them during a period of illness or disability and this can sometimes be quite at odds with what, as professionals, we think is important to them. I guess if we are conducting research with a view to improving pathways and outcomes for patients it stands to reason we should include them and take into consideration their feedback.
Q: Why did you want to get involved in this study as Chair of the PPIP and what are your objectives?
A: I was thrilled and honoured to be asked to Chair the Panel. Having nearly 20 years' experience in encephalitis and having probably worked with more encephalitis patients than anyone else in the world, I think Professor Tom Solomon felt I was a natural fit to head up a patient panel for this global study. The study is so important and will reduce death and disability in a range of countries throughout Africa, Asia and South America - to be part of this is a true honour and an opportunity to make a real difference. I was also attracted to the challenges that chairing the panel presented. Patient and public involvement is becoming more common in the western world however it is a new and emerging concept in many countries and so to participate in a study that promotes the benefits of having patients involved in your research is really exciting.
Q: The membership of the panel reflects the international scope of the study, can you tell us a bit more about the background of its members?
A: We currently have representation from Brazil in the form of a public health official and the sister of a patient affected by encephalitis; in India we have a patient affected by encephalitis, the sister of a patient affected by encephalitis and two professionals involved in the recovery and rehabilitiation of patients affected by neurological conditions; in Malawi we have an academic from the University of Malawi and we are currently recruiting for a patient representative there; in the UK we have a parent of a child affected by the condition, the research officer from the Meningitis Research Foundation and also a patient affected by meningitis and sepsis.
Q: What do you hope the Brain Infections Global project can acheive?
A: I hope that we can identify barriers to good practice in diagnosis and management of patients affected by brain infections and that we can provide tools for people to address them, resulting in a reduction in death and disability of patients affected by brain infections in the low and middle-income countries in which we are focusing. I hope we can also introduce the notion and benefits from having patients and public involvement in research studies, in countries that are currently not familiar with the concept.
Brain Infections Global Profile of the Month (May 2019) - Dr Linda Nyondo-Mipando
(added 1st May 2019)
As part of our B I Global profile of the month feature, for May 2019 we would like to highlight the work of Dr Linda Nyondo-Mipando who is based at the College of Medicine in Blantyre, Malawi. She has kindly answered some questions about her role as part of B I Global.
Q: You are currently working at the Malawi College of Medicine, what is your role there?
A: I am a lecturer in Health Systems and Policy and I also serve as Deputy Dean of the School of Public Health and Family Medicine.
Q: What is the best thing about working in this field?
A: Ability to improve service delivery of the various evidence based interventions. I also really enjoy carrying out quality improvement projects with my students.
Q: Can you briefly explain your role on the B I Global project?
A: I am a Co Investigator for the study on the component that the College of Medicine will manage. I will specifically oversee the implementation of the project in the three District Hospitals and will be the contact person for these Hospitals.
Q: What do you hope the Brain Infections Global project can achieve in Malawi?
A: It will strengthen the health system, specifically labs, and improve timely diagnosis and management of Brain Infections. I also believe that the skills learnt in this specific area will easily be applied in other settings of the Facility.
Q: What are your three most favourite things about Malawi?
A: Our beautiful Lake Malawi, the island in the sky "Mulanje Mountain" and the Tea Plantations.
Twitter account: @NanelindaNm
Next Brain Infections Global Scientific Steering Group meeting to take place on 26th April 2019
(added 12th April 2019)
The 2nd meeting of the Scientific Steering Group will take place on Friday 26th April via videoconference with participation from all partners in Brazil, India, Malawi and the UK. The Liverpool School of Tropical Medicine has kindly offered to host the call. The main objective of this meeting is to review progress of the pre-study against the action plan following the previous meeting in Liverpool in January and prioritise activities. We will also be discussing a timeline for publications and the upcoming annual meeting at the Christian Medical College in Vellore, India that will take in July.
Christian Medical College in Vellore, India to host Brain Infections Global annual meeting
(added 22nd March 2019)
We are delighted to announce that the Brain Infections Global annual meeting will take place at the Christian Medical College in Vellore, India on 9th and 10th July 2019. By then we will be at the half way point of our project. We will be joined by our partners from the UK, Brazil and Malawi as well as from within India. There will also be representatives from our Advisory Panels. The objectives of this meeting will be to review the progress made since the last meeting held in Liverpool and to share experiences between study sites as the implementation phase gathers pace. We will also discuss plans for data analysis and project outputs.
Following the meeting, we also plan to hold the University of Liverpool's very popular NeuroID training course at CMC, the first time it has been held outside Liverpool!
Brain Infections Global takes centre stage at British Consulate event
(added 18th March 2019)
Brain Infections Global marks World Encephalitis Day 2019
(added 25th February 2019)
On 22nd February, Brain Infections Global partners joined forces to raise awareness of Encephalitis (inflammation of the brain) for World Encephalitis Day. At NIMHANS in India, our clinical research fellow, Bhagteshwar Singh, played games with local school children and discussed with them how important it was to make sure that those affected get speedy diagnosis and treatment.
Brain Infections Global Study launches in Liverpool
(added on 24th January 2019)
The Brain Infections Global launch meeting was held at the Liverpool Medical Institution on 15th and 16th January 2019. Our partners from India, Malawi and Brazil came together for a dynamic 2 days of discussions to review progress made since the study was conceived and to refine project implementation plans. Presentations included the current context in partner countries followed by updates on research evidence in the fields of diagnostics, health economics and social science.