Digital self-monitoring – The importance of co-design and digital inclusion

Shereen Boreland, Digital Pioneer Fellow and Senior Digital Innovation Pharmacist at the Royal Brompton Hospital, shares her experience of co-designing a self-monitoring service for Cystic Fibrosis patients and her thoughts on the importance of ensuring digital inclusion.

After a long week there came the call, a call from a patient letting me know that her lung function was now the highest it had ever been. She had also just checked her weight and was using her Fitbit activity tracker daily. She wanted to thank me for taking the time to set up her equipment and said it felt like Christmas being given all of it. She felt more in control of her measurements and health. Hearing about the positive impact that self-monitoring and the equipment we provide has, really makes my job worthwhile.

Putting patients in the driving seat of their health has always been one of the ambitions of my Digital Pioneer Fellowship project. The ability to have access to, and be able to use, remote technology has been even more necessary with the emergence of Covid-19. The inability to have face-to-face consultations forced us to find alternative ways of managing a patient’s health whilst developing self-monitoring solutions that ensured patients were not digitally excluded.

How my digital journey began

I am a Digital Innovation Pharmacist working with the Adult Cystic Fibrosis (CF) team at the Royal Brompton Hospital. Prior to my current role I have always had roles working as a clinical pharmacist and my involvement with digital health and digitial technologies has been limited. Self monitoring of blood glucose is the closest I had come to self monitoring for patients. I always understood the importance of not only monitoring patients health but also equipping them with information regarding their health, including medications.

I have worked with patients with CF for the past eight years and have always had an interest in this clinical area. In this time I have seen fantastic new developments in new drug therapies that have had a positive impact on patients lives. But even though these developments have resulted in improvements in patient health, such as fewer exacerbations and hospital admissions, we still need to monitor them. Helping to find innovative ways to do this is one goal of my current project.

I have always had an interest in digital innovation and technologies. I was really excited to apply for the DigitalHealth.London Digital Pioneer Fellowship programme as I was interested in working with digital change makers within the NHS. I wanted to explore how to develop my existing project and discuss ideas with peers from other organisations. I have really enjoyed the sessions so far and my action learning set has been great. The Fellowship has provided support for my project and has given me ways of driving this forward, including expansion, and most importantly has given me strategies for how to deal with issues when things don’t quite go according to plan.

Co-designing self-monitoring services for patients

My project whilst on the Digital Pioneer Fellowship is a continuation of the development of a self-monitoring app for Cystic Fibrosis patients. The project includes the set-up, design and incorporation of virtual consultations for other members of the multidisciplinary team including Pharmacists, Physiotherapists, Dietitians and the Clinical Nurse Specialist teams. We are also developing a website so patients can gain access through the app to information and resources for managing their health remotely. The ultimate goal is to incorporate additional self-monitoring features into the app including monitoring of blood glucose and oxygen saturations, and to develop a medicines management section to allow planning and recording of medication administration. We would like to expand self-monitoring equipment to all our cystic fibrosis patients at the hospital, currently this is just under 600 patients, and to have them engaged and using this technology.

From the start this has been a co-design project and the original idea actually came about from patient feedback. Prior to creation of the app, patients were coming to the hospital for their appointments and completing monitoring tests whilst here. Some of our patients traveled from far away and time was required for travel and expenses incurred by coming to clinic. Being able to self-monitor health parameters at home and have access to virtual consultations has saved money and patients’ time. Patients were involved in every step of the developmental stage to ensure that we were creating a product that is useful for them. We are also working closely with our technology partner to incorporate changes and drive further development.

Patient and product evaluation have played an ever-important role in design. Patient feedback on website design was really important as it highlighted issues we had not considered which were important for ensuring it was inclusive. For example, additional topics were identified, and patients identified that the use of closed captions in videos is particularly important for our hard of hearing patients.

Ensuring digital inclusion

One of the bigger issues highlighted through the co-design process and the rolling out of this project is the issue of digital exclusion.

We have been lucky that we have been able to provide the necessary equipment to patients however they are still required to have access to a smart phone or tablet in order to use this technology and they need to know how to set it up. This has really highlighted to me the need to ensure that there is digital inclusion for all patients, so none are left behind.

To achieve this in my project, I have worked with our digital partners to develop ‘how to’ guides both in paper form and as online videos that patients can watch. I am also working with the clinical nurse specialists to bring patients to the hospital who are struggling with the setup of their devices so that I can set up the equipment for them. We have also obtained funding to allow patients with no access to smart phones to obtain them.

Looking to the future

With the emergence of digital technologies which are so useful in remote monitoring of patient care, it is vital we develop strategies to ensure they are inclusive. Inclusion of patients in co-design is essential and working with other members of the team is critical to ensure that we get this right. I am excited about the future and what this work will bring both for me and for the future of self-monitoring and patient engagement. I feel that the skills I’m developing during the Digital Pioneer Fellowship and through working on this project can be applied to other digital transformation projects and I look forward to exploring other areas of digital health as I develop throughout my career.

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