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Liveblogging: OMG my pancreas just texted

John Pettengill a type 2 diabetic.  Talking at the South by Southwest Interactive conference.

#OMGdiabetic

I am a diabetic and I live with a chronic disease.  25.8 million in the US today.   A diabetic looks at each meal as a carbohydrate count with high/low glycemic index.  You are thinking about yoiur condition all day long and we know why lab values like A1C are important.

Some of us are bigger experts than others 17million / 67% US diabetics aren’t managing their blood sugar well.  Something is systemically wrong with the system if this number are having problems.  This is not to remove personal responsibility.  Cost to US is enormous in healthcare costs and chronic diseases cause 7/10 deaths per year.

Why aren’t we handling it?

Can technology help us manage it?

In 21 minute segments (an average doctors visit) we talk about our health.  They ask questions about our lifestyle and health.  It’s isolated within the doctor’s office which is outside the normal pattern of your life (bar, office, restaurant, gym).   This is 2 hours per year approx and the doctors aren’t there when we make daily decisions about our disease.

This isn’t enough for patients with chronic disease.  31% are having problems with their medication in 45-54 age bracket.  Even more are dissatisfied with their eating or exercise plan.  The problem doesn’t lie mostly with the areas where doctors write prescriptions…. telling them “eat well and exercise” doesn’t work.  And these things are the most effective at controlling type 2 diabetes.

1/5 doctors use group visits to schedule 5 patients at once… but doctors’ time is expensive.

1/2 use individual visits with non-doctor educators (nurse, dietician)

3/4 hand out pamphlets but patients don’t need pamphlets – they need each other.

Web 2.0 will save the day?

83% of patients have looked online for information.  And 57% are looking at user-generated health information.

wheelmap.org – to enable wheelchair users to get information about which places are wheelchair accessible.

curetogether – a site for migrane sufferers who share information about what causes migranes

Most diabetic tools focus on charts and graphs – testing bloodsugar and monitoring food intake.  But the charts and graphs aren’t so important.  Being a diabetic doesn’t make you a statistician nor does it make you interested in data analytics.  They need to focus on the behaviours that create the numbers.  These apps also miss the biggest point – other people aren’t in the app.  Culture ‘peers’ are important.  That’s the best way to change with peer support.  Programmes like AA and Weightwatchers work better when there is structure in the social group as well as the programme.  Support is proven to help improve health outcomes.

Diabetics try to form groups

There are 6 or 7 Twitter hashtags for diabetes #dgnow and there are forums Juvenation twodiabetes.org The things we write about validate them and do include tips and tricks.  The problem with forums is it’s a bit like the wild west – you have to hunt to find things relevant to you. They aren’t rooted in YOUR day.  They are high level concepts and very medical.  People with chronic disease only 8% use these support group forums.  We need to remake the tools to manage diabetes.

If diabetes is managed well it needs to be managed all day long – touchpoints of checking blood sugar and management decisions.  It also has to be managed for ever.  Chronic disease is like that.  This is a very long time.  But that’s why we use phrases like “One day at a time”.  Reduce the day down to now and step by step.

We designed an app for diabetes

We researched why web 2.0 sucks so much for us.

  1. patients are isolated – by the stigma of having type2 diabetes – surrounded by people who aren’t making the same decisions and changing lifestyles
  2. current solutions are clinical not revolved around the patient and how her day goes
  3. forever is really hard.

We decided on an app – your doctor can’t come with you hour by hour – so it has to be mobile with the patient.  The patient has to be surrounded by the culture of care and create a new ‘normal’ of people invested in this.

Our categories are based on the things that people already talk about and these will change over time.  The focus is on the users not on the clinical diagnosis.

We present people with faces not with numbers.  Charts play a role but are subservient to people who want to make a change.  Looking forward not backwards at your history in numbers.

A micro network is full of people in similar situations – likeminded people.  Health information isn’t for sharing with everyone in your network on Facebook.  But they are ready to share with one another within the community of diabetics. One of the topics is “slipping up” and commiseration is also part of the solution.  Entering data into charts doesn’t excite people.  But adding the emotion behind the chart number is good “we’re happy about 110”.  I woke up at a good healthy bloodsugar number. Users can gather support to get themselves back on track.  “We can do better tomorrow”.

Achievable goals offer more rewards more frequently. We structure our goals in bite-size decisions and goals made daily.  We wanted to encourage snacking and ideas that may appeal to you and fit inside your life.  We don’t want to give these people things they can’t do e.g. give up steaks, or go to the gym.  Help them find things that work for them – walk instead of going to the gym.  Mini goals that fit in YOUR life.  What can I fit in today?

We focus on 3 things today.  Remind me that I’m not making my sacrifice alone – users are reminded that they’re never doing this alone.  We made updating quick and celebrating the small victories that lead to better management.  Remember the days aren’t open ended (a user is never ‘done’).  We have to cap our days – something specific that enables achievement.  Maybe later raise the bar or choose harder goals.

The emotion is what motivates updates but the data is still important.  People talk about this.

Conversations with doctors still happen but they’re about what daily life is about not numeric test results.

“Last week you didn’t drink any soda and you substituted a salad and went for a walk”.

More tools and Better Tools

This works for diabetes – but the heart disease patients also need help and those with Crohn’s and arthritis and MS.  We need to create new solutions and new tools for these people.

How things worked in the past – it was focused on the primary touchpoint with the doctor.  But chronic diseases are different they require tools that are with them every day.  Mobile is for our tool.  13% more are online using phones this year compared to last.  Diabetes in minority communities is prevalent as are mobile phones.  Continuous and cheap support as an add-on to the doctor.

Q&A

People in charge of these projects look at the disease state in negative terms.  Incentivisation is an approach – does this work?

There are interesting things online with doctors participating in forums providing clinical reason.  Incentives are hard because it’s hard to frame the conversation in a way that’s believable.  It could work.  But it’s all about the experience.

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