Our patient and public involvement advisory group
Chair of the advisory group - Nanik Pursani
I have a professional background in education both as a researcher and as someone who has produced research proposals for funding. As a service user I have been involved in a number of health related research and service improvement projects. I have also submitted a healthcare related research proposal for funding as a patient researcher.
As a member of the King’s College Stroke Research Patient & Family Group I have a good working relationship with other service users and academics at King’s College London. I attend regular meetings where researchers give formal presentations of the research they are intending to undertake and I provide a patient viewpoint on the research proposal.
I have been a lay reviewer for NIHR for some time and have provided reviews for a range of health related research projects, including stroke and cancer proposals. I have recently been recruited as a patient sub-panel member on the NIHR PGfAR programme.
As a recovering stroke and cancer patient I believe all patients and carers should have the opportunity to be actively involved in a collaborative dialogue with researchers and healthcare professionals to develop new and approved approaches to health issues.
As an engineer I am aware that it is important to research, design and produce things that are useful to people.
I became a member of the Patient Public Involvement Advisory Group (PPIAG) to try and help ensure that users of medical services have access to the most up to date clinical techniques and drug therapys. By taking part in Medical Research and Development Projects public and patients can assist in improving and creating new treatment pathways.
I have previously been Chair/Vice Chair of my local Cancer Patient Group set up by the South London Cancer Network and Chair/Vice Chair of a Cardiac Patient Group set up by the South East London Cardiac Network. I was also a member of my local LINK and sat on the management group and took part in several task groups.
I have taken part in several medical research projects both as a Patient Advisor and a participant and realise the importance of Public/Patient Involvement in research as a way forward to better treatment pathways. Only a patient can give a real insight into whether a treatment is working and what if any side affects they may suffer.
My aim is to try and promote greater public and patient awareness of and involvement in medical research.
Professor Chris McKevitt
Chris McKevitt is a Professor in Social Science & Health at King’s College London. He completed a PhD in social anthropology at the London School of Economics, with research in southern Italy focusing on experiences of suffering and healing.
Since then he has conducted research in the areas of HIV/AIDS and sexual health, doctors with illness, and stroke. Stroke research focuses on experience of stroke survivors and families, and development and evaluation of novel methods for intervention.
In 2005, he set up the King’s College London Stroke Research Patients and Family Group, which brings together stroke researchers and people with a stroke. Activities include six weekly research meetings and twice yearly publication of Forward, a research newsletter for participants in the South London Stroke Register. Outside King’s, he is a member of the Royal Anthropological Institute’s Medical Anthropology Committee, the Intercollegiate Stroke Working Party and the Stroke Research Network’s clinical studies group for patient carer and public Involvement.
I have been involved with Guy’s hospital as a kidney patient for some years and, in December 2011, had a living-donor transplant. At that time I agreed to take part in two trials being run by the renal unit. My experience throughout has been extremely positive and I have learnt just how important it is for patients and the healthy public to become more engaged with the work of the health professionals. My operation was only possible because of the trials that had been undertaken by others in the past.
Medicine has made tremendous advances in recent years and is set to be revolutionised by current thinking, but at the cornerstone of all this progress is clinical trials and these require the active participation of both patients and the general public. It is vital that we find ways of promoting this work and ensuring that everyone is made aware, and given opportunity, to participate. The PPIAG is working to help the health professionals, public and patients effectively engage so that we can all benefit in the future.
I was first introduced to public and patient involvement during my career as a psychiatrist. I resisted it but with experience a once entrenched viewpoint melted away. Retirement brought with it a new perspective following the discovery that I had cancer and would be on the receiving end of healthcare. My journey has brought new insights, and so for me the advisory group has offered a timely opportunity to apply them. Research lies at the heart of current and future successes. I want to make sure that the benefits of a patient’s voice is felt at every stage of the process from the tentative early beginnings to full clinical application.