Our DCFs tell us a little more about themselves, why they were interested in getting involved and their experiences so far with the Wessex SDE.
Lakshmi:
“My name is Lakshmi Kulkarni and I am part of the Basingstoke Hindu Society and volunteer with them for various projects.
Most people in our community are very wary about giving any data out especially if it is health data. My motivation to become DCF stemmed from this as hopefully listening about the SDE from a known face or someone similar to them, they could be more accepting of the idea of the Wessex SDE. I am running various health awareness sessions for the community over the next few months and will cover all age groups and will talk to them about the need and benefits of having the SDE. I will hopefully be able to explain it to them in their language as I can speak 4 different Indian languages.
The training has helped me understand the need for the SDE and I will be able to relay this to the community and also collate feedback from them as they are the lesser heard members of our society.”
Andy:
“I have worked with, and in, IT for too many years and more recently have been closely involved with information security, particularly as it has developed into cyber security. As a result, when I received an invitation to consider joining this programme as a digital critical friend, I thought it might be interesting, stimulating and, most importantly, helpful to the programme to share my experience and knowledge. Representing the ordinary people, whose very personal medical information would form the basis of the system, also inspired me so that I could gain answers to all those questions anyone would ask when faced with a development such as this.
I was delighted to be offered the opportunity to join the programme, and subsequently joined the required training sessions to see what was required, and to learn new stuff! The online training answered virtually all my questions, but there was always the opportunity to submit additional questions which were answered comprehensively and quickly. Carried out in a very friendly and encouraging atmosphere, the training updated some of my knowledge, told me more about things about which I already had a little knowledge, and introduced me to new specialisms such as those in medical research.
I was asked to talk to other members of the public and to help them to understand and make the most of the contribution they were making to the programme. I have offered to get more involved with one of the working groups that look at the more specialist areas of the programme and that will increase my contribution a little more. The commitment overall is exactly as promised with the option to give more time to the programme if so desired, particularly spreading the word about the programme and the huge benefits that should accrue from it in the years to come.”
Sandra:
“Research has shown that since the Covid Pandemic, there was not enough data collected from ethnic minority groups. Some of these barriers are because of a lack of awareness. I would like to encourage more people from ethnic origins to get involved in research to change this status. I believe that Research is important to promote better health for the future.”
Ewa:
“As both a patient and a retired scientist with a background in clinical research, I was immediately drawn to this project. The NHS data is uniquely extensive, and enabling safe, efficient access to it is a challenging yet vital undertaking. One of the biggest challenges is fostering public confidence in the security of their data, and I believe the DCF initiative can help address this by promoting greater transparency and openness in the process.
The opportunity to represent the voice of the public and patients from the very beginning has been invaluable. Personally, I was impressed by how the project’s management welcomed us as equal partners. There was openness on both sides, and our questions and concerns were met with genuine respect.
Thank you again for including us in such a meaningful way.”