- NIHR Maudsley BRC
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- Publications (93)
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- Patient and Carer Involvement and Engagement (49)
- Events (38)
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- Affective Disorders and Interface with Medicine (20)
- Dementia and related disorders (19)
- BioResource (17)
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- South London and Maudsley NHS Foundation Trust (15)
- Substance use and harms (14)
- Mobile health (13)
- Biomarkers & genomics (13)
- Public engagement (13)
- Training & capacity development (13)
- Child & Neurodevelopmental disorders (12)
- BRC Interview Series (11)
- Neuroimaging (11)
- Bioinformatics & statistics (10)
- CRIS blog (9)
- Affective disorders and their interface with medicine (7)
- Pain (5)
- Therapeutics (5)
- Autism (4)
- depression (4)
- Novel Therapeutics (4)
- Centre for Translational Informatics (4)
- NIHR Maudsley BRC (3)
- Obesity (3)
- Clinical trials (2)
- King's Clinical Research Facility (2)
- Changing clinical practice stories (2)
- COVID19 (2)
- Lifestyle and Learning from Extreme Phenotypes (2)
- Precision Psychiatry (2)
- NIHR Maudsley Biomedical Research Centre (BRC) (1)
- Vaccine (1)
- King's Health Partners (1)
- MRI (1)
- Rett syndrome (1)
- UK Disability HIstory Month (1)
- New study demonstrates link between brain chemical and visual processing in autism
- Psilocybin, in 10mg or 25mg doses, has no detrimental effects in healthy people
- No convincing scientific evidence that hangover cures work, according to new research
- Applications invited for Equality, Diversity & Inclusion Champion role
- Next generation of rapid-acting antidepressants: Can ketamine help prevent suicide?
- New collaboration with digital therapeutics company to investigate preventable opioid respiratory deaths
- Bringing together imaging and genetic mapping to investigate patterns of vulnerability in the brain
- Love Your Liver Month
- Genetics helps estimate the risk of disease – but how much does it really tell us?
- Fellows award for Dr Katherine Young for work on the mental health of young people during and after the pandemic
- NEWS2 evaluated for prediction of severe COVID-19 outcome in large international study
- SIREN study finds past COVID-19 infection provides some immunity for at least five months
- Interview with Miguel Vasconcelos Da Silva
- COVID-19 lockdown loneliness linked to more depressive symptoms in older adults
- The significant effect of lockdown on gambler’s mental health
- Antibiotic may improve outcomes for depression in people with low level inflammation
- Novavax trial reveals 89.3% effectiveness in preventing COVID-19
- Case studies
- Deciphering the genetics behind eating disorders
- NIHR appoints Senior Investigators for 2021
- Depression and anxiety are associated with disagreement between patient and doctor assessments of psoriasis severity.
- Professor Peter Goadsby awarded world’s top Brain Prize 2021
- Interview with Dr Parisa Mansoori
- New study highlights the urgent need to reduce inflammation in overweight people with depression
- Novavax confirms vaccine provides 100% protection against severe COVID-19
- NIHR welcomes new vision for the Future of UK Clinical Research Delivery
- COVID-19 pandemic leads to rapid uptake of remote consultations in mental healthcare
- An Interview with Chifundo Stubbs
- Brain scans could offer sign of postpartum psychosis risk
- Innovative UK data hub to enable research and innovation to tackle mental illness
- Inflammation is a core feature of depression: new evidence from large-scale study
- Mothers’ depression impacts mother-infant relationships
- Shifts to remote mental health services continued after lockdown, according to new study
- An interview with Zunera Khan
- Silent MRI: improving access to neuroimaging research
- Simple blood test can accurately reveal underlying neurodegeneration, according to new research
- New research from King's has identified three key inflammatory proteins which are lower in individuals at risk of severe COVID-19.
- New insight into how anti-inflammatory effects of omega-3 fatty acids could help reduce depression
- Five ways universities could improve mental health support for male students
- CogStack wins an Artificial Intelligence in Health and Care Award
- Volunteer calls for others to support dementia research in south London
- Europe's first 'game-changing' portable MRI machine arrives at King's Health Partners
- Global ALS/MND recognition Day
- Multiple long-term physical health problems increase risk of depression later in life
- An interview with Dr Marija-Magdalena Petrinovic
- COVID-19 variant vaccine begins recruiting in south London
- New Race and Ethnicity Advisory (READ) group is recruiting members
- NIHR Fellowship awarded to Dr Brendon Stubbs for research in persistent pain and serious mental illness
- Knowing what we don’t know: How statistics can help autistic people to live their best life
- New funding for innovative neuroimaging research
- Words don’t come easy: identifying perinatal self-harm in healthcare records
- Problems in thinking and attention linked to COVID-19 infection
- Opportunity for researchers to consult with new Race and Ethnicity Advisory group
- Exposure to air pollution linked with increased mental health service-use, new study finds
- Maudsley Hospital and King’s College London’s National Addiction Centre light up purple to raise awareness for International Overdose Awareness Day
- An interview with Charles Curtis
- Join our Adolescent Mental Health Advisory Group
- Common factors within the gut associated with depression and bipolar disorder
- SURE Recovery App – two years on after its launch
- Using CRIS to map the impact of the COVID-19 pandemic – service user and carer priorities
- Genetic risks for depression differ between East Asian and European groups
- Excess deaths in people with mental health conditions increased during the COVID-19 pandemic
- ADHD Awareness Month: Developing neurofeedback as a new treatment for ADHD
- Genetic risk of mental health conditions may influence where people choose to live, study suggests
- Eating disorders are just as likely to start in adulthood as childhood, report finds
- An interview with Dr Charlotte Tye
- NIHR: Your Path in Research
- Rett Syndrome Awareness Month
- Using MRI to investigate the brain response to inflammatory stimuli
- MANTRA training developed at SLaM to be rolled out to adult eating disorder services across the UK
- Six years of memory decline seen in anxious, depressed older people during pandemic
- An interview with Dr Katherine Young
- The silent and widely impacting cost of Vulvodynia: lessons learned and future recommendations
- What can research tell us about engaging adolescent boys into school-based mental health workshops?
- Diagnosis of depression in adolescents can negatively impact educational performance, study shows
- Using neurofeedback as a means of treating feelings of self-blame in depression
- Review looks at benefits and barriers following shift to remote mental health services during pandemic
- What is treatment-resistant depression? New report calls for clearer definition to inform research and improve treatment
- NIHR Maudsley BRC: A Year in Review 2021
- UK Disability History Month - an interview with Naomi
- People feel lonelier in crowded cities – but green spaces can help
- Vitamin D supplementation does not improve symptoms in people with psychosis, study finds
- BRC researchers on the Highly Cited list doubles to twenty
- CRIS Blog: Are we under-estimating self-harm rates due to differences in hospital admittance procedures?
- BRC Researchers celebrated at the King’s Awards
- New study finds evidence for reduced brain connections in schizophrenia
- Exposure to trauma ‘activates’ genes into causing depression
- Nurses in research blog: Emma and Naomi
- New findings on the effects of cannabidiol on people with psychosis
- New centre of excellence for children and young people's mental health launched
- High volumes of mental health-related tweets associated with crisis referrals
- Call opens to drive the future of health data research
- CRIS Blog: Answering real-world questions about medication and mental health through pharmacoepidemiology
- CRIS Blog: Appropriate use of healthcare records for research
- CRIS Blog: Artificial Intelligence and Data in Suicide Prevention
- Largest ever study of eating disorders launches in England
- C4C research register now totals 20,000 people
- Georgia’s research secondment
- Study finds that Community Treatment Orders do not reduce hospital readmission rates or stays
- 10,000 people could benefit from new migraine drug
- Thirty risk factors found during and after pregnancy for children developing psychosis
- Heroin injection associated with respiratory disorder
- Researchers appeal to public for help to assess mental health impact of the COVID-19 pandemic
- CRIS Blog: CRIS in the time of coronavirus
- Depression and anxiety increase premature death by up to 134%
- Mental health and brain research must be a higher priority in global response to tackle COVID-19 pandemic
- Stories from our students: Becki
- COPE Study: Investigating the impact of the COVID-19 pandemic on mental health and well-being
- Thought provoking men’s mental health film released
- Animated parenting tips for struggling households
- Researchers track COVID-19 isolation effects on older people’s health and wellbeing
- From Babylonian blood-letting practices to wearable tech, new film on the evolution of depression perceptions and treatment
- Patient and public recommendations for getting involved in BRC research
- Cognitive behavioural therapy reduces the impact of dissociative seizures
- Mind the Gap 17-25: A diagnosis doesn’t define you
- Sarah Markham writes about her experiences in research
- Covid-19 Psychiatry and Neurological Genetics (COPING) study
- Trial testing a unique formulation of ibuprofen to treat COVID-19 launches
- New study to monitor the real-time effect of COVID-19 on mental health services
- Introducing the CRIS Natural Language Processing (NLP) Service
- Study shows Cognitive Remediation Therapy leads to improvement in cognitive skills and well-being in people with bipolar disorder
- New Research Training and Capacity Development lead announced
- Growing numbers of alcohol related hospital admissions linked to local spending cuts
- ACE inhibitors and ARBs not associated with severity of Coronavirus
- Data linkages animation explores the evolution of healthcare records in research
- Study estimates impact of COVID-19 pandemic on UK mental health after first month of lockdown
- Genes related to inflammation and stress may help tailor treatments for depression
- Can wearables like Fitbit devices be used to help detect COVID-19?
- Lithium in drinking water linked with lower suicide rates
- Loss of potential: teens diagnosed with depression show reduction in educational achievement from primary school to GCSE
- £1.2 million to roll-out dementia care home programme to COVID-hit sector
- NIHR announces mental health research goals for next decade
- Rosalind helps researchers navigate personal health data
- An interview with Dr Ndaba Mazibuko
- National study into neurological impact of COVID-19
- Study supports link between traffic-related air pollution and mental disorders
- How our eLIXIR research database helps reduce risk of health problems in mothers and children
- Eating a healthy diet can ease symptoms of depression
- CRIS Blog: Pathfinders and the public
- NIHR Maudsley BRC researchers host dementia discussion in collaboration with South London Theatre
- Could intranasal oxytocin be used to treat people at clinically high risk of psychosis?
- CRIS blog: Using data on hospital episodes to look at the physical health of people with personality disorders
- Cannabis-based medicine to be tested in Alzheimer's trial
- Largest ever study of depression and anxiety now recruiting individuals from Northern Ireland, Scotland, and Wales
- One in ten UK hospital inpatients is alcohol dependent
- CRIS Blog: Art and Value at Bethlem Gallery: an art-science collaboration with Sarah Carpenter and CRIS
- Genetic study reveals metabolic origins of anorexia
- Compensatory strategies to disguise autism spectrum disorder may delay diagnosis and have negative consequences for mental health
- Close monitoring essential to ensure safety of ketamine for depression
- Six BRC academics promoted to new positions, including two new professorships
- CRIS Blog: Medichec - A tool to make prescribing safer for people with dementia
- Study gets under way to test psilocybin for treatment-resistant depression
- 'An inspiring day': BRC community gathers to share knowledge at conference
- CRIS Blog: CRIS data demonstrates need for better physical healthcare for people who use heroin
- SURE Recovery: the new addiction recovery app designed alongside service users
- Our first ever artist residency to kick off with Afrobeat and Dub gig in South London
- Expert panel examines barriers faced by working class academics
- UK Biobank mental health study
- CRIS blog: Using CRIS to evaluate mental health diagnoses in routine national statistics
- Engaging in physical activity decreases people’s chance of developing depression
- Unprecedented study identifies 44 genetic risk factors for major depression
- New research: Hospitals often missing dementia despite prior diagnosis
- 2018 Takeover Challenge
- CRIS blog: The future of psychiatry research
- CRIS blog: Do long-term prescriptions of multiple antipsychotics contribute to the reduced life expectancy of patients with serious mental illness?
- Improving dementia care and treatment saves thousands of pounds in care homes
- New service in south London reduces hospital readmissions for people with bipolar disorder
- Ten BRC researchers and academics among most cited in the world
- Students 'take over' the BRC
- Computers can ‘spot the difference’ between healthy brains and the brains of people with Dissociative Identity Disorder
- Service User Advisory Group for 12-16-year-olds
- New Clinical Disorders and Health Behaviours cluster lead announced
- Blog: The SLG Arts Assassins collaborate with the BRC
- Professor Matthew Hotopf receives CBE at Buckingham Palace
- Professor Robert Stewart awarded ‘Collaborate to Innovate’ project
- NIHR Maudsley BRC researchers receive Senior Investigator awards
- Research blog: Using social media to recognise mental health conditions
- Department of Health Chief Scientific Adviser Chris Whitty visits Maudsley BRC
- NIHR Maudsley BRC commences five-year research programme
- IMPARTS Seminar Learning from experience
- New research highlights higher hospitalisation rates in people with intellectual disabilities
- Digital Technology for Mental Health: Asking the right questions
- Maudsley becomes London’s Global Digital Exemplar
- CRIS blog: An online risk calculator to identify candidates for early intervention services
- NIHR Maudsley BRC researcher wins award to understand suicide warning signs in children
- Who are the NIHR? #WeAreNIHR
- Brain stimulation may improve cognitive performance in people with schizophrenia
- Risk for bipolar disorder associated with faster ageing
- Omega-3 fatty acids improve symptoms in children and adolescents with ADHD
- South London and Maudsley tops NIHR league table for number of active research studies
- Connecting care homes with research
- Research blog: Using advanced search technologies to help manage infectious disease outbreaks
- A&E attendance for people with dementia is common and increasing
- Event: Seminar on dementia art project "Beyond Memories"
- Professor Oliver Howes receives Royal College of Psychiatrists Award
- First network analysis of patient flow in two UK hospitals published
- Honorary Degree for Professor Dame Til Wykes
- Concentrated naloxone nasal spray as good as injection
- Professor Matthew Hotopf appointed Vice Dean
- Potential for machine learning to predict unknown adverse drug reactions
- Complications at birth associated with lasting chemical changes in the brain
- Study examines opiate-dependent patient deaths
- NIHR Lectureship awarded
- Treatment cuts migraine days by half
- CRIS Blog: Serious Mental Illness and Pregnancy
- Kings world-class contribution to understanding of clozapine
- Research blog: PROMPT project reveals complex profile of people using psychological therapy services
- Tony David John Toulmin Lecture
- Crick synapse event
- IMPARTS Seminar Harnessing digital technology in mental and physical healthcare
- CRIS blog: Eight years on
- Experts call for greater recognition of little-known forms of dementia
- Event: Clinical Research Facility Research Forum
- Ewan Birney MRC SGDP Seminar
- Al Chalabi Sheila Essey Award
- Event Pint of Science 2016
- RADAR CNS smartphone wearable devices transform medical care
- Cardiovascular drug underprescribing
- Consultation reveals better integration between physical & mental health physicians as top priority
- Prestigious Fellowships awarded to BRC researchers
- Dermatology clinic psychology screening project shortlisted for BMJ Awards
- Independent Researcher Awards 2016
- BMJ Award for team who are incorporating mental health service into dermatology clinic
- Research blog systematic biases in death certification
- Event launch of new collaboration for digital innovation in mental health
- Victoria Derbyshire show inheritance mental illness
- BRC spin out Mindwave launches
- Research blog: Learning how to be a critical friend to researchers
- Research blog International Clinical Trials Day
- Blood test to personalise depression treatment for the first time
- Centre for Translational Informatics launches
- Professor John Strang receives Knighthood
- Film mental health summer school
- Mental health hackday - your help needed
- Research blog: Trialling an online tool to help women make decisions about antidepressants in pregnancy
- Data linkage group your help needed
- CRIS blog: Investigating the impact of antipsychotic medications used to treat people with serious mental illness
- Research blog Maudsley BRC part of winning team at NIHR training camp
- Neuroimaging theme research funding
- NIHR Maudsley BRC announces 2016 Youth Awards winners
- Event: Illusions A window to your brain
- Matthew Hotopf wins prestigious Katon Research Award
- IMPARTS shortlisted for HSJ award
- NIHR Maudsley BRC receives £66m new investment from government
- NIHR Maudsley BRC researchers win prestigious awards
- Event NIHR i4i Programme Mental Health Challenge Awards Launch
- Genetic tests could help predict which psychosis patients will develop schizophrenia
- BRC leaders receive academic promotions
- Event No Exchange, Same Pain, No Gain - Risk-Reward of Wearable Healthcare Disclosure for Receiving Pain Treatment
- C4C recruits 10k
- Research blog: How fatty clues in the blood are improving our understanding of Alzheimer’s disease
- Early intervention shows promising long-term reduction in severity of autism symptoms
- Bringing mental health education to a classroom of 300
- South London and Maudsley rated top mental health trust for recruiting patients to clinical studies
- Mental Health & Technology: Ideas Generation Workshop
- NIHR i4i mental health challenge launch
- UK Government announces £4m investment in NIHR Wellcome Trust King’s Clinical Research Facility
- NIHR Maudsley BRC PhD student wins International Society for the History of Neurosciences book prize
- NIHR Maudsley BRC's takeover challenge
- Event Suicide detection and prevention using mobile technology, social media and informatics
- Event Misconceptions and Reconceptualisations in Digital Mental Health
- Research blog: Defining treatment resistance in schizophrenia
- Mental health needs of baby boomers covered in new report from England’s Chief Medical Officer
Dr Sagar Jilka on patient and public involvement in research, number crunching and picnics
Dr Sagar Jilka is an academic researcher and Patient and Public Involvement (PPI) coordinator for the NIHR Maudsley BRC. He manages the patient advisory groups and facilitates involvement in activities for researchers and the public.
Can you give a brief overview of your career?
My undergraduate degree was in Music Technology and Psychology at Keele University. From there I focused more on Neuroscience. I did an MRes in Neuroscience at the University of Birmingham and PhD in Neuroscience at Imperial. I then did a postdoc with Lord Darzi in health policy and then had a bit of change and worked as a data scientist in a start-up betting before coming to the IoPPN in May 2017.
What are you most proud of?
I’m most proud of growing our patient involvement activities and our advisory groups and seeing the buzz we create from it. Every time I engage with patients about the research we're doing at the BRC, and I see their excitement and intrigue, it’s a really good feeling. I'm also proud of how much our researchers value user involvement - from senior academics to pre-doctoral academics - it’s very much central to their research.
How did you get interested in patient involvement?
A lot of the research I had done previously purely came from ‘an academic brain,’ and I always felt that perhaps a lot of my research participants didn't really benefit from it.
My research centres around anything where patient and carer views and perceptions are needed in mental health, and those voices are embedded in our research. This can range from views on say a novel treatment, such as ketamine for depression, or on research participation, such as Consent 4 Contact, or even on clinical data sharing.
Why should patients, carers, and the public work with us at the BRC?
Participation won’t magically cure mental health, but it will really provide the building blocks. It's a piece of a puzzle that will really help us better our research.
While there might not a real tangible, direct benefit for patients themselves in terms of a novel treatment or anything like that, there are lots of other benefits of getting involved in research.
For example, advisory groups provide a really warm, open space for people in a similar position to them to talk about their experiences. A lot of our members feel it's a bit of a social for them, they're in a room with likeminded people who have lived experiences who they can connect with on experiences, perspective, and emotionally. They get all the research training and then they apply all their experiences to a research study. That’s when the research becomes really meaningful.
Unfortunately often the carer voice is overlooked, but carers are as valuable to our research. Right now we're doing a study with the Dementia research group and the MALADY group, to identify dementia misconceptions on social media, and the participants are all carers.
The insight they give is significantly shaping our research because people caring for somebody with dementia will often have to answer questions from friends, family or their local community. And the questions can range from things like what's the difference between Alzheimer's disease and dementia?
We're very conscious of the importance in the carers voice and we try to work hard to make sure we include them.
What would you say to a patient or a carer looking to get involved in research?
Please get involved!
There's different ways to get involved. You can join advisory groups, not necessarily ours but there are plenty of others, the SLaM involvement register, study steering groups and of course directly being a participant in research. This could be either in person through interviews, online via surveys or puzzles or tests, in hospitals in clinical trials.
We need a very diverse sample that's representative of the local community. And the only way we're going to get that is by having people from the local community.
Any advice for researchers in working with patients and public in shaping research?
Speak to as many different people with lived experience as you can and take their opinions as you would your academic supervisor.
In my two and a half years working here, when you take the advice of carers and patients, everything else becomes a lot easier and the quality of your study gets better.
I believe fundamentally the quality of your research will be better. You've got the opinions of those people that would potentially take part in your study from the start.
It means you’ve got your dos and don'ts sorted right from the start rather than learning on the project. They've already said do this and don't do that. So you won’t use the wrong terminology, or have a patient complain about it halfway through your study.
What do you enjoy most about working with patients and the public?
I get a lot of insight about a variety of research from a patient's perspective - hearing what patients have to say about the work that I'm doing and also the work that's going on here.
It really helps me plan my own research agenda and plans going forward, because I know that there are certain things I should say or shouldn't say, or dos and don'ts, because I've had them when patients talk about it.
I really love research. I love crunching numbers.
Where did your love of crunching numbers come from?
I've always been a very curious boy and over the years, I realize that the fundamental truth comes from numbers. I feel with numbers you get a truth or you get a definitive understanding of a concept.
What does an average working day look like for you?
It's very varied, and what I mean by that is, I'll be doing research, for example, in the morning, and that might include data analysis, managing research staff or writing an ethics application, and then in the afternoon I might be facilitating an advisory group, then I'll have to switch back into research mode.
Aside from colleagues, anything you miss from working in Denmark Hill?
I miss Fish and Chip Fridays in the IoPPN canteen.
Who is your science hero?
What has been your favourite book, film or TV series in lockdown?
The Explained series on Netflix. The ‘All or Nothing’ documentaries on Amazon Prime - I'm currently watching the Tottenham Hotspur series!
What's your best new discovery of lockdown?
I've discovered loads of local parks and how to picnic. I’ve bought a picnic basket and a picnic blanket and there's so many green spaces in London. We’ve been pitching up and enjoying having a picnic.
For more information about our Patients and Public engagement Cluster
Visit our webpages: www.maudsleybrc.nihr.ac.uk/patients-public/
Tags: Staff News - BRC Interview Series - Patient and Carer Involvement and Engagement -
By NIHR Maudsley BRC at 22 Sep 2020, 11:00 AM
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