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Patients and Carers

Patients and carers play a key role in our research endeavours. We have recruited members of the UCL Patient and Public group with interest in or lived experience of multiple health conditions who have informed plans for the research and contribute through regular meetings. Our public participants advise on the appropriateness of working definitions of multi-morbidity, work with researchers to identify the most relevant conditions that lack effective treatments and advise on presentation of research results for patients and the general public.

 

Lay Summary

As people live to a greater age there is an increased risk of suffering more than one health condition at a time. Known as multimorbidity this has a serious effect on the daily lives of patients, their families, and their carers. The Multimorbidity Mechanism and Therapeutics Research Collaborative (MMTRC) is a UK-wide research project funded for 3 years by the Medical Research Council.  The project will examine ways to improve the sequence and patterns of multimorbidity and the evidence obtained will aid the care of patients with multiple health conditions.  We will also seek to address the problem of coordinating treatments so that treatment for one condition does not cause difficulties in the treatment of another condition suffered by the same patient.  The frequency of this “competition” between health conditions will be established and solutions identified.  In doing this we hope to identify medicines that can treat more than one condition and investigate the potential of new uses for existing safe medicines.

The research 

Our research will utilise pseudonimised patient data recorded electronically by the NHS as well as data from genetic studies and clinical trials. We will look across the different types of evidence to check consistency to ensure our recommendations are sound. Where uncertainties remain we will recommend new clinical trials or genetic studies. In this way we hope to improve the outlook for patients, regardless of their particular combinations of health conditions by maximising the benefits from effective treatments.

Two patient participants, Amanda Roberts and Ayath Ullah,  are co-applicants on this project. 

Patient and Public interest in MultiMorbidity (PiMM)

A Patient and Public interest in MultiMorbidity (PiMM) patient and public advisory group exists to help shape the research process (planning, delivery, dissemination) and monitor progress of the project, and assist in ensuring that the findings from the project are widely disseminated.  The following videos provide a carers perspective on multimorbidity

 MediaCentral Widget Placeholderhttps://mediacentral.ucl.ac.uk/Player/beg0eh95

 

MediaCentral Widget Placeholderhttps://mediacentral.ucl.ac.uk/Player/chHi5I7D

 
 

The Team

Team Picture

Natalie Fitzpatrick

Natalie Fitzpatrick

Natalie has more than 20 years’ experience managing complex research programmes involving large linked electronic health record (EHR) data.  Natalie is Phenomics Programme Manager at the UCL Institute of Health Informatics where she manages the Health Data Research UK (HDR UK) national Phenomics Implementation projects across 6 UK sites and leads on facilitating research collaborations for the CALIBER platform (https://www.ucl.ac.uk/health-informatics/caliber).  Natalie is also patient and public involvement lead at UCL and coordinates the Phenomics for People Action Group and Patient and public interest in MultiMorbidity Lay advisory committee. 

 


Amanda Roberts

Amanda Roberts

Amanda Roberts is one of the two lay co-applicants on the MMTRC project.  Her experience as a patient and carer is mainly around atopy - eczema, asthma, hay fever, food allergy and anaphylaxis.  She has always been fascinated by the possibilities of health data and is thrilled to be involved with such a great team.


Mary Mancini

Mary Mancini

Mary is in her mid-forties.  Her experience of multimorbidity covers mental health issues (anxiety, depression and psychosis)  and Baretta’s syndrome , a malformation of the oesophagus that causes excess  reflux, with a hiatus hernia.  Weight gain and oversleeping can be consequences of these conditions.


Margaret Ogden

Margaret Ogden

Margaret comes from Co Durham. Her experience of multimorbidities includes Wegener’s Granulomotosis, depression, hypertension, type 2 diabetes, high cholesterol. Being a patient and public involvement member of the Medical Research Council multimorbidity funding panel prompted her to join this dynamic public involvement group at UCL University, London.


Martin Cox

Martin Cox

During twenty years of supporting public and patient engagement in research, Martin has seen the frustration and misery suffered by patients with multimorbidity. Previous research has, without significant success, attempted to address the “silo” mentality in secondary care, which has been a principal contributor. Progress has, until now, been hindered by access to, and existence of, reliable data. Martin welcomes the opportunity to support the public engagement in this wide-ranging research.


Rashmi Kumar
Rashmi Kumar

Rashmi is from South London with very diverse socio-economic and health deprivations communities. As a carer for his mother with multiple long-term conditions including Chronic Obstructive Pulmonary Disease (COPD) and Heart Failure (CVD), he has first-hand experience of challenges patients and families are having to manage in their lives every-day and how with little support, these can make significant improvements. Rashmi is a Trustee of large Patients and Public Participation Group (PPG) Network working with GP Practices and primary care health care service providers. Rashmi is keen to ensure concerns and challenges of diverse populations are considered in all areas of health and care research.


 

Lynne Wright
Lynne Wright

Lynne lives in East Devon and after serving six years as a Governor of her local NHS Foundation Trust hospital and being successfully treated for cancer became involved in PPI.   For the last ten years she was the carer for her husband, who sadly died earlier this year, he had Parkinson’s  with Lewy Body dementia and other co-morbidities.  Looking after someone with multi-morbidity, particularly when they also have dementia, is extremely stressful and Lynne is very hopeful that this research will bring about changes in social care for this group of people 

 


Ayath Ullah

Jean Gallagher

 


The team meets quarterly