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Sharing medical data: From the perspective of a patient

FHI editorial team
Jan 31, 2017 - reading time 4 mins

By Christine Lydon

 

Dr. Sole qualified from University College London in 1976 and then studied Urology in Birmingham and Leeds gaining the higher degree of Master of Surgery in 1988. He was appointed as the first full time Urologist in Hereford in 1988 and has developed a special interest in prostatic surgery. As Chairman of the Three Counties Urological Cancer Group he helped develop urological sub-specialization in the region. He is the Urology Lead for the national group practice Alliance Surgical Plc.

By Christine LydonRead less
Christine has worked in healthcare communications for over fifteen years. Following a diagnosis of breast cancer in 2015, she has a strong interest in wellbeing after a life changing condition.
Woman Riding Bicycle On Road Against Trees During Autumn

What personal health monitoring systems do you use (fitness trackers, wearables, apps etc)?

I’m currently not using a personal health monitoring system but, having recently completed treatment for breast cancer, my health is very much a priority for 2017. I’m planning to use a wireless fitness tracker which I hope will help keep me motivated, as well as improve my overall health. I’m very excited about doing so – we’ve come a long way from the days of the flimsy pedometer.

During your treatment, did your HCP ask you to monitor your health or diet?

To a certain extent – I was encouraged to drink plenty of water, get enough sleep and take regular gentle exercise – but there was also the understanding that treatment was tough enough so if I wanted a chocolate biscuit or a glass of wine then I could have one.

Have you ever shared personal medical data from a connected device with your healthcare professional?

I haven’t used a personal health monitoring device before, but sharing data from one wasn’t suggested to me as part of my treatment, or something that I’d have instinctively considered. Right now, I wouldn’t feel comfortable approaching my GP with information from a fitness tracker without them asking me for it but, given how quickly things evolve, this could change in a year or two.

Do you think there need to be more systems put in place to make it easier for patients to share data with HCPs?

Yes, I’d welcome the chance to share my data with oncologist and GP. Given that the data of just one patient is of little use, there should be adequate systems in place to educate patients on the benefits – and risks – of data sharing and how it can help themselves and others. On a personal level, it could be helpful to be able to access meaningful data that might potentially allow me to compare myself with others at a similar stage of recovery.

Are you aware of the benefits of sharing personal medical data?

Yes – and I’ve long believed that the benefits far outweigh the potential risks. That said, it’s important that people feel comfortable about sharing their data and understand how it can translate into better health for all of us.

What makes you feel uncomfortable about sharing personal medical data?

I would have two concerns: firstly that what is being shared is accurate and honest, secondly that it is stored securely.

Do you think viewing personal medical data makes you feel more in control of your health?

Yes, assuming that the data is viewed as part of the overall picture, and not in isolation.

What are your predictions for personal data sharing in 2017?

The proposed introduction of the General Data Protection Regulation will no doubt encourage open debate and discussion about the pros and cons of data sharing and, hopefully, ease the concerns of many. Personal trackers and wearables will only increase in popularity with more applications for their use, giving us the opportunity to share a range of personal data, encompassing physical health to fertility, emotional well being to sleep.

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