Adapting Patient Reported Outcomes (PROs) for use on Mobile Devices

The MyPal project will use mobile apps to present Patient Reported Outcomes (PROs) measures to patients so that they can describe their experiences of their cancer and its treatment.

In this article, Lefteris Koumakis, a MyPal partner, at the Foundation for Research and Technology – Hellas (FORTH,) based in Heraklion, Greece, describes the technical challenges they faced in developing the app.

PROs in routine care

There has been a growing interest in using PROs to monitor a patient’s condition as part of routine clinical practice. PROs were originally developed for use in clinical trials to help assess the effectiveness of an intervention. This move has been given added momentum by recent developments in digital technologies, which have opened up the possibility of patients using their mobile devices, rather than pen and paper to complete PROs.

The MyPal project focuses on people with cancer, and the new app includes several different PROs asking about experiences of pain, quality of life, and quality of care.

Usability of the new app

There are a number of different challenges. The first one is the usability and acceptability of the technology for the patients involved. The majority of the patients are likely to be older people who, may lack digital skills, and their abilities could well be affected by their illness. For these reasons special attention has been paid to their particular needs in the design, and we have made sure the MyPal app is as intuitive and easy to use as possible.

For example, there is a clear, easy-to-read font, big buttons and well-contrasted colours to make everything on the screen much easier to see. As well as being able to complete the PROs by touch, we have also included a voice-based system, known as a “conversational agent”. This gives patients the possibility of completing the PROs simply by speaking, which some patients may prefer.

By testing this during the MyPal clinical trial, we will be able to see if voice interaction actually increases usability for some of the patients.

The standard pen and paper PROs also frequently have numerous questions on the same page. This just won’t work on small mobile screens, particularly for older users. That is why we have adapted the PROs so that there is only one question on the screen at a time. Once completed, or skipped, the patient can move to the next question. We think simplifying the content of the screen in this way will make it much easier to use.

Timing of the measures

Another critical factor we needed to take into account, has been the frequency with which patients need to complete the different PROs and how often they will be sent reminders.

With pen and paper PROs used as part of clinical practice, it is common for patients to complete the forms at the clinical setting prior to, or as part of, a consultation. Being able to complete the forms on mobile devices means they are readily able to do this at any time in any place. However, this brings its own potential problems.

From user feedback during the development stage we know that patients are concerned that if they are asked to complete forms too often, they may be forced to think about having their illness more frequently than they wish.

The same issue arises with reminders and motivational messages to complete the PROs. If they are too frequent, it might make the patient feel stressed, or remind them that they suffer from a condition that, at times, they would prefer to forget.

The chosen frequency of scheduled reporting and reminders is therefore of paramount importance, and is something which, along with our partners at Atlantis Healthcare, we have given a huge amount of thought and consideration. One of the key purposes of the trial will be to see what we can learn about the optimal frequency of reporting for this group of people with cancer with this type of app.

Security and privacy of data

Another challenge for every health related app is the trust and the security that the system provides, so privacy and effective data protection are absolutely critical.

To this end, we are using well-established security technologies that we have employed in previous EU projects for the capture, storage and accessing of patient data which all strictly adhere to European legislation on data protection.

In addition, we have set in place a set of strict data access policies and data sharing constraints so that access to the data is highly restricted and controlled and respected at all times.

Our hopes

We hope that by taking into account the particular needs of our patients during the development of the app, and ensuring that the system is safe and secure, we can gain their trust in the acceptability and usability of the MyPal app which will be key to a successful trial.