Health Tracking – My IBD Care

Disclaimer: Occasionally, I am asked to review particular products and services. I work with those who I believe have IBD and ostomy patients’ best interests at heart. In light of this, all views and experiences shared on this blog are mine and of my own honest opinion, and do not reflect the official position of anyone I review for.

To find out more about the My IBD Care app visit the Ampersand website here, download the app for Android here and Apple here. Do check out their Instagram account here for behind the scenes, updates and polls.

History of Health Tracking

It all started with GPS on your phone to track a run. What a great idea! But portable medical gadgets have been around since pacemakers were widely used. From this we’ve gone from looking into and monitoring pauses in breathing, known as sleep apnea, to measuring the tremors experiences by Parkinson’s patients; to where we are now – being able to track a multitude of aspects of our health to better understand our bodies and if they can help us understand specific conditions.

Many self-tracking studies focus on tracking diet or exercise. These studies approach self-tracking either for preventative health management, for personal curiosity, or for learning and promoting a healthier lifestyle.

When did it evolve to help Chronic Health Conditions?

Research studies have approached self-tracking by focusing on its ability to assist in chronic disease management, since chronic illnesses usually require long-term treatment and management activities. The collection and reflection on the data collected has helped people suffering from these conditions in their disease management. It has improving their knowledge about the illness, identifying their own triggers, and controlling health indicators. Studies that focus on these aspects generally aim to control or mitigate symptoms and to prevent or delay disease progression.

Why is this helpful to IBD and Who Benefits?

Currently, much of health information is organised around systems – for example: cardiovascular, gastrointestinal, and neurological.

A chronic disease, such as Inflammatory Bowel Disease (IBD) – composing of Crohn’s disease (CD) and Ulcerative Colitis (UC) – is well-situated for technological intervention. By engaging, educating, and monitoring patients, technology can help understand and improve care in a disease that presents uniquely in each individual. IBD is relapsing and remitting in nature, with disease exacerbations (ie, flares) being a key driver of the acute need for medical care and having a negative impact on quality of life (QoL).

Treatment is unique to each patient; so understanding the symptoms that patients experience is a foundational component of clinical care, but doctors are not always effective at collecting this information. Enter digital health applications. They can track a multitude of aspects of IBD – much like a clinician in a hospital setting would do in a consultation. And in tracking these, patients can receive treatment early in the course of flares, thereby reducing the need for acute care and the risk of long-term complications.

Please note, that an mobile health application does not replace the need or expertises of a medical professional who oversees your care. While some applications do have the ability to share data with your consultant/s, do not rely on an application to provide you with care and attention when you need it. 

The My IBD Care application highlights four key areas, in which they have used patients, clinicians and nurses to create an tool which can deliver:

• Self Management –  IBDC, HBI, SSQ scores taken on a routine and regular basis to build a foundation for assessing a patients current clinical picture. These three scores are used to assess patients with IBD – both CD and UC – in hospitals. Being able to access these scores away from the hospital setting – a routine but sometimes stressful and anxious time for patients – in the comfort of their own home, which is then connected to their medical team; builds a great foundation for patients taking control of their disease.
• Patient Advocacy – I like to think that anything patients can do to help them advocate for the care they need – in the end, they know their bodies better than anyone else! – is a good thing. In order to be balanced, this should not be the only tool a patient should use to become their own advocate.
• Medication and Appointment Reminders – Always a handy thing to have access to. Linked to self management, sometimes life does get busy and we forget. At other times, we might have more than one specialist to see and multiple medications to keep track of. Maintaining compliance with medications – and thus treatments – can save times and money too in the long term.
• Information – The dashboard feed updates with new information related to IBD on a regular basis as well as having a back catalogue of information written by medics and patients alike.

Two point to add on:

• Sharing of Data – On downloading and signing in, you sign a user agreement. This is content for the application and the company to store and share your data with your clinicians, if the hospital is signed up. The very minimum of data is collected to enable the application to work within its purpose but you can add more details if you choose too.
• Benefits v Risks – While there is alot of chatter about digital health applications being overused, overcomplicated, not data compliant and even misused; I think with regards to its benefits, these outweigh the risks of using any digital application. For some, daily tracking is seen as overly involved in your illness and choose not to use to have some distance, but many do find that the information gather can help establish patterns. It can also be a good timeline of logging things to discuss at appointments.

Please be aware that sharing of data does follow GDRP. Ampersand get the minimum amount of information needed for self management – and with a user’s consent – they may share this data with their clinical teams for better management; if your hospital is connected to the application. More information can be found here.

Do you use any apps to track your health?

Do you have any questions or queries? Or just want to share your own experiences?

You can leave me a reply here or comment via my social media accounts – on Twitter, find my blog page on Facebook and over on Instagram

References:

• Routine Self-Tracking of Health: Reasons, Facilitating Factors, and the Potientla Impact on Health Management Practices – M Figueiredo, C Calderia, Y Chen & K Zheng, AMIA 2017 [article]
• Digital Health Apps in the Clinical Care of Inflammatory Bowel Disease: Scoping Review – A Lukas Yin, D Hachuel, J P Pollak, E L Scherl & D Estrin, JMIR 2019 [article]
• Digital Health Tracking: Preventative Care or Privacy Invasion? – Harvard Health, March 2019
• From Principles to Practice: Benchmarking Government Guidance on Health Apps – The Lancet Digital Health, June 2019
• Big Win for our app Partnet My IBD Care – Crohns and Colitis UK, 22 March 2019