IBD (General)
What a year 2019 has been for the My IBD Care family! From winning awards to partnerships, so much has happened and we thought we’d share our year in review with you.
OUR STORY
For some backstory, My IBD Care is the first app developed by Ampersand Health – a social impact company that vows to improve long term conditions through digital. The app is the child product of 2 leading gastroenterologists at King’s College Hospital and Barts Health, in London, and the founder of Ampersand Health. The initial reason for developing the app was as a response to patient needs. Patients wanted to have more access to their clinical teams and to care outside the hospital walls… and My IBD Care was born!
The app allows patients with Crohn’s or Colitis – whether in remission or unwell – to manage their condition better. From daily tracking of their behaviour to appointment and medication reminders, My IBD Care is designed to allow patients to stay on top of their condition. It allows people to manage their Crohn’s and Colitis day-to-day, bringing together a personal health record, daily tracking and easy-to-access help and support from Crohn’s & Colitis UK.
As mentioned, My IBD Care, was developed with clinicians but also with patient groups. Patients were involved at every step of the journey, from giving ideas to what features should be in the app, to testing, and to giving feedback. And we are proud to say that this inclusive, collaborative way of working led us to win the HSJ Partnership Award for Patient Digital Participation in March!
PARTNERSHIPS
Another great accomplishment that’s happened for My IBD Care in 2019 is partnering with the leading charity for Crohn’s disease and Ulcerative Colitis in the UK, Crohn’s & Colitis UK. In May, we announced a joint initiative to enable people with IBD to take an active role in managing their health.
Our partnership with Crohn’s & Colitis UK definitely gave us a chance to meet many people that are affected by the condition. We met so many of you at events such as the Walk IT events (London + Manchester), Run the Night and many others. Meeting people and understanding their wants, needs, challenges, is truly what inspires us and pushes the app in the right direction – giving people what the care they need.
Another great partnership we pride ourselves in, is working alongside Ana Ibarra, IBD nurse specialist at the Royal London Hospital. You may know her as @ibdtechnurse on Instagram. Ana is a young, dynamic, caring and tech savvy nurse. She works with us on developing the app and making sure patients “feel” the care that is typically provided by the nursing team. Ana is our in-house nurse and supports patients using the app, making sure they are taking in all the potential it adds to a patient’s care plan.
COMMUNITY AND PATIENT INVOLVEMENT
We’ve had many accomplishments and things to be pleased with in 2019, but the thing we’re most proud of, is the feedback we’ve received from patients. Most patients (and carers) using My IBD Care have expressed how valuable the app is as an addition to their care regimen. Having all you need in one place, on your smartphone, seems like the perfect solution for many.
One of our users, Louise Helen Hunt says:
“I am a big believer and user of self-management – when in clinical remission *and* when in flare – and collecting data in a simple and easy format has really helped. It takes five minutes of my day before going to bed and I can review it before a clinic appointment to discuss with my consultant.
I’ve found a consistent routine and pattern to what I’m tracking, and it’s made feel more positive about just how many good days I do have. And even when I am struggling on some days, I can see previously that it comes back up and that gives me hope.
It’s taken away a huge chunk of my time away from dwelling on the ‘negatives’ I might have had that week, or month.”
We run several workshops and feedback forums every year, where we give our users the chance to directly participate in the future direction of the product. In 2019, we ran two interactive workshops, multiple user interviews and got incredible first-hand feedback. We’re proud to say that most of the comments that we’ve received have been incorporated – in one capacity or another – in My IBD Care.
You can get involved too! To participate in 2020 My IBD Care workshops (where you’ll get to meet other IBD warriors, share stories, get inspired, contribute new ideas to the app, make new friends, and of course, nibble on [healthy] snacks!), please send an email to rachel@ampersandhealth.co.uk expressing your interest.
AWARENESS IN SELF MANAGEMENT
With long term conditions, people have always turned to self management in some form of another. Before apps, phones and all things digital, people used different methods to keep on top of their health such as keeping a food diary, an excel sheet with medications and appointments, a mental logo of what might cause a flare, etc. But the advent of technology has made things easier for people to be in control of their health.
The My IBD Care Family is pioneering the idea of self management. Check out our Instagram page to see the awareness we raised for World IBD Day and what has also been done for awareness week in December.
MY IBD CARE IN 2020
2019 has been a great year, but definitely only the start for My IBD Care. We have so many exciting things to come in 2020, including lifestyle and wellbeing programmes that will be incorporated into the app!
Ampersand Health have involved specialist consultants and nurses, programme-specific subject matter experts, behavioural scientists, national charities (e.g. Crohn’s & Colitis UK) and patients themselves to develop these lifestyle and wellbeing programmes.The programmes will support patients with their Sleep, Medication adherence, Physical activity, Diet and Psychological support – we are so excited to have these in the hands of our users!
We are also lucky that we have a community of patients that are helping us in developing the new features of My IBD Care. One thing is for sure, we are having fun and learning so much along the way! To find out more about what we’re doing or to be part of our community of patient panel, get in touch with rachel@ampersandhealth.co.uk
What an amazing year it’s been and we thank you all for being part of our journey! We wish you a great and prosperous 2020 and look forward to pioneering IBD self-management together!
Love,
The My IBD Care Team
See what the My IBD Care app is all about
The app is up and running with all kinds of features that have been helping those living with IBD, including courses, advice and symptom tracking.
