Researchers need access to patient data - Jasmine Hodge-Lake

medical research “I wanted to be a part of changing how patients think and feel about how their data is used and how it is safeguarded.”

Jasmine Hodge-Lake, panel member, tells us why she got involved in this patient panel

There needs to be a wider discussion with all patients about the need for the use of their data in research for better patient outcomes for all.

Jasmine Hodge-Lake
Patient Data Panel Member

"When I was first put on my heart medication I developed an adverse reaction to it. This meant I had to stop taking it. Having gone through this I thought about how, maybe, this experience could have been avoided for myself and other patients like me.

For example, if patients like myself could be identified through our data as having a risk factor at point of diagnosis, this could make a big difference! This is one way of eliminating experiences like this for patients and, for me, clearly illustrates why it is important for researchers to have access to patient data.

However, we all know the stories. No one wants to know that their data has been lost, stolen or hacked as had happened in recent years with some companies. The most important thing for most patients will be their need to feel confident about the protections that will be put in place to ensure that all of their data is safe.

After seeing that the patient panel was expanding their membership I decided to apply. I wanted to be a part of changing how patients think and feel about how their data is used and how it is safeguarded. As well as having an understanding of data issues from my careers, I felt that being on the panel will be a proactive way of being able to affect the change I want to see in this area. 

I am very enthusiastic about the work I will be doing with the panel.

Jasmine Hodge-Lake
Patient Data Panel Member

I attended my first meeting in March 2017 feeling very nervous and excited. Whilst my first meeting was a very top heavy information packed session, I left feeling great to be a part of something that will have enormous benefits to patients now and in the future. It is my opinion that when patients fully understand how their data can be used for the well-being of patients, most patients will be more than happy to share their data for the good of all.”

 

Last edited: April 2017