Dr. Joseph Cafazzo is exploring how teens with type 1 diabetes can use their cell phone to track and self-manage their condition for one of the innovative projects receiving funding through the Care to Know Centre’s first annual Applied Client-focused Team (ACT) research grants program.
Recently we chatted with Dr. Joseph Cafazzo, at the University Health Network, Centre for Global eHealth Innovation in partnership with the Hospital for Sick Children and the University of Toronto, about this project. The team is exploring an exciting mobile phone-based self management system, cleverly titled Bant, for adolescents with Type I Diabetes.
Q: Please tell us a bit about your project.
A: We wanted to look at the challenges in managing kids with Type 1 Diabetes. It requires them to take blood sugar measurements at least 4 times per day, usually with a finger prick, and administer insulin to control their levels and bring them into a normal range. They suffer from uncontrolled blood sugar which causes other illnesses later on in life, including neuropathy, kidney and cardiac issues.
The issue with adolescents is that they are transitioning from a period where may have had parents managing their condition for them. As they grow older they may exert more independence and may not be as adherent as they were as children.
Often teens are not taking measurements regularly, and their parents don’t know – when they are at school or friends’ houses – and it causes stress in the household. They need to develop self-management skills for when they are entirely outside of the care of their parents.
Q: What factors led you to leveraging mobile phone technology to affect self-management behaviour for adolescents with Type 1 Diabetes?
A: The ubiquitous mobile phone is so central to this demographic’s life. Dr. Debra Katzman Medical Director of the Eating Disorders Program at SickKids, found that even as inpatients, teens are never far from their phone. We believe that clinicians should leverage that for patients’ care. It’s an obvious communications tool.
We set out to create an application that facilitated self-care and learning more about your condition through measurements. We asked clinicians, if you could peer over the shoulder of a kid and give them words of advice if their reading was too low or too high, what would they be? These are teachable moments to help them better understand what’s happening – was it what they ate?, do they have a cold?, etc.
We knew the initial novelty of using an iPhone or iPod Touch will be great, but it most certainly will wear off. The question is how do we continue to engage them? We want to build in social networking aspects, specifically around them being able to share experiences with other Type 1 diabetics like themselves. In a high school of 1000 kids there may be only one other diabetic like themselves – but they likely don’t know each other.
The social network community that is built in gives an opportunity to share their experiences over a Twitter-like interface. It will also have provisions to communicate with their parents and providers in a similar fashion.
Q: How will integrating user-centered design enhance client-centered care for adolescents and their family caregivers?
A: There are some diabetes applications already. Creating another data-logger where you enter blood sugar results is not what we wanted to do. What we really wanted was to initially find a reference design to put in front of kids, their parents, and their healthcare providers. Then we need to test it iteratively and refine the design until it’s something strong enough to trial and that we feel will have an impact on children’s lives.
User-centered design requires several iterations, multiple focus groups, one-on-one interviews and testing with the end user, parents and providers. It’s meant to be an inclusive care model. We also have yet to define how parents and providers will interact with each other. We haven’t decided that yet, it’s part of the other work we have to do over the coming months
Q: Can you describe some of the unique incentives and teachable moments the Bant application offers teens?
A: We’re giving them iTunes redemption codes when they take measurements regularly and participate in the community, as rewards for their adherence. We’re hoping it will keep them engaged, which we have discussed with behaviouralists.
Apple Canada has been very supportive. They are helping us arrange for the iTunes redemption codes on a regular basis. We’ve asked for them in $1 increments, if possible, rather than the standard gift cards for $10 or $25 dollar amounts.
Q: So far, have you been surprised by any findings or unexpected insights from clients and families?
A: I’ve been surprised by how engaged the clinicians at SickKids have been. Many clinicians are jaded over any sort of new technology intervention related to health records. They are inundated with the next new IT gadget, and frustrated with the lack of actual health outcomes. What’s surprising to me is how little resistance they had to this idea. It hits on all the ideas they had toward diabetes management. They are excited, and they’ve been included in the design process, which is unique. They are having an input in shaping what this looks like.
Q: How will the findings for your work impact the client and/or their families during and after the project?
A: We’re hoping that between the parents and the adolescents it’s a non-confrontational way of communicating. In some families this can be a very contentious issue, when parents are constantly worried about the condition of their child. The clients themselves are feeling invincible at this age and they just don’t see the consequences down the road. We’re hoping it builds a buffer between them by means of a system of communication that they are very comfortable using. We’ll see whether this is effective or not.
We know anecdotally that parents and teens tend to communicate better electronically. It will be clear in the system when the teen is not adhering, so we don’t know if the “Big Brother Effect” will have an adherence effect with this demographic as it does with older, type 2 diabetic patients.
Q: How important is the ACT Research Grants program to ensure smaller, quality projects have a chance to get off the ground?
A: Most funding agencies, especially in Canada, are very big on supporting evaluation studies. You can find a lot of agencies that are willing to fund a randomized control trial on a certain intervention. There are very few who will fund the development of a near-market technology. Something that is seemingly simple like an iPhone application won’t be touched. They may feel the technology development is not fundamental research. We know it to be the case that it can be quite complex to get this technology right, largely because this app is mostly about behaviour, and not technology at all. If it were easy, it would likely have already been done.
Saint Elizabeth Health Care was looking at high-impact, near-term, relatively simple interventions. What we’re talking about here is an intervention about people’s behaviour and trying to keep them adherent, engaged and understanding their condition more. This is not the type of research the major funding bodies would have interest in. We’re extremely grateful that Saint Elizabeth Health Care is so forward-looking.
Remote monitoring is not novel, but it costs thousands of dollars. There have been several studies in Canada that cost millions of dollars and only serviced a few hundred patients. None were scalable in any way. We’re looking at something scalable to hundreds of thousands of users.
This can leverage existing technology and doesn’t even require a data plan – it can work off of WiFi. We’re working on developing wireless integration for the pilot. The glucometer will transmit wirelessly to the iPhone.
Q: What would you say to larger funding bodies, government or industry to encourage them to support similar initiatives?
A: This has been a problem in Canada, in particular with hospitals and universities. We don’t have a great track record of turning Canadian ideas into real products and systems that will affect each other’s lives. RIM is a great example, and the story is not told enough. We have powerhouses – top universities, top people. We may be somewhat risk-averse, but I’m hoping these smaller projects have momentum and people see the value in working at developing them into real products. I think many of the funding bodies are still very focused on basic research and not applied research. We’re not realizing a direct benefit until people start using that technology. It requires a closer relationship with industry, and industry will disseminate the products.
Q: What are your plans for the project after the funding period ends?
A: This is a bit of a journey and I believe Bant has a wider application beyond type 1 diabetes. From an evidence-based medicine perspective we’re determined to prove the efficacy of this. If we get positive results from the pilot, we would be seeking a randomized control trial from a larger funding body.
I also want to explore other disease domains. I can see parallel applications for asthma and hypertension.
I can see partnering with the phone carriers, as they are very well positioned to disseminate this to many users. They already have an established relationship with users. This could lead to an extended service to link up SickKids, and personal health records.
There’s a two-pronged approach to this project. We do want to get this app out to the general public and get comment before the pilot. We’re hoping to get it into the iTunes store, and using the public Twitter system first, in January.