Why did you decide to get involved with the PRSB’s assurance app project?
In 2013 I was diagnosed with breast cancer and in 2015, it became metastatic. I am now in treatment for life, which means I have had a huge amount of experience with health and care services over the years. My treatment has been up and down, and I am in and out of hospital frequently. I want to use my experience to make positive changes in the health and care system. For example, I’ve previously campaigned for pharmaceutical companies to lower drug prices so that they are more affordable for the NHS. I wanted to get involved in the PRSB’s project so that I could use my experience as a patient to support better enhancements in future care.
What is most important to you about developing the accreditation framework for apps?
The most important thing will be safeguarding patients. We want to enable people to make the best possible choices about the apps they are using so they can feel confident in the decisions they are making. It will support people to get more involved in their own health and care and take control, which is really important. Being unwell is a challenging time and many things are out of your control. Apps can help patients to feel like they have more control, as well as providing advice and support.
What type of assurances do you think patients want to feel confident that an app can be trusted?
Trust is a big topic for many people. You are not only trusting an app with your data, you are also trusting that app to provide you with the right answers. You want to know at the very least that it won’t cause you harm, and that hopefully it will benefit you and provide the right support you’re looking for. For an app that patients use before they see a doctor or pharmacist, the main thing will be understanding exactly what is meant by pre-primary care and what the app can provide.
What are you biggest concerns about apps?
I think GDPR is a concern for many people. While there are people who are willing to share their data, others have big concerns about how it could be used and whether it will be used in their way. Some people are so private, they would not want their data to be used even for research purposes. We also have to consider how cost effective they will be for the NHS and user, and how accessible. For example, not everyone has a smart phone or is willing/able to use apps and websites. If there is huge reliance on apps, it could alienate some people.
What kind of apps would you like to see being developed in future?
I have used fitness apps before, but found they are not well tailored to my condition. In future I would like to see more apps that are relevant to certain conditions, as well as apps that can take these into account. For example, could there be a health monitor app specifically for someone living with cancer? Of course, as apps become more developed we will be able to input more information and tailor them to our needs.
How have you found involvement with PRSB to date? would you recommend it to other patients?
I like the fact that PRSB incorporated patient views and has a patient lead on projects. I think it’s incredibly important that our voices are represented, particularly as health and care continues to change and we get more involved. I am really interested in the future of apps and to see how they will impact the future of health and care.