Tag Archives: Intel

Researching Medical Conditions – Advice from an Expert

I recently got some advice on how to research medical conditions from a parent who has a wealth of experience in health care systems and researching illnesses.

David Prendergast is a senior researcher at Intel, although we work in different teams we share the same office. David has, unfortunately extensive knowledge of dealing with a child who has a serious medical condition. His daughter, Beth, suffered from a rare form of leukaemia. Unfortunately Beth passed away, but in the 9 months of Beth’s illness David learnt an awful lot about researching medical conditions, and how to interact with doctors, he took the time out to share his tips with me, and I wanted to write them down and share them with everyone else here. I hope these few ideas and concepts will help other parents who, like us are facing the steep learning curve required to get up to speed on infantile spasms.

 

Tips on Research

When we first heard of Matties diagnosis Emma and I panic researched. We searched the internet for Infantile Spasms and randomly read articles we found. It is something that the doctors and nurses in the hospital had told us to avoid. It is easy to get confused or to read articles of questionable reliability, and Emma and I quickly found ourselves facing two questions:
1. Why isn’t the information we’re reading matching what the doctors are telling us?
2. How do I know what articles to trust and what to avoid?

Tip: Asymmetric Data Exchange

As you’ve probably noticed doctors generally don’t appear to give you the whole story. Depending on the doctor in question it can often take us as parents, many questions before we get a sensible answer. This doesn’t happen by accident. Medical professionals are often trained to behave in this way. This is called “Asymmetric Data Exchange” where we, as parents provide the doctor with all the information we know, in return the doctors provide us with only the little bit of information that they believe that we need to know. For a parent it can be incredibly frustrating. The doctors don’t do this to be mean or to annoy us, they do it for a reason. Doctors have to speak to a wide range of people, for some people facts and figures help and make sense, but for others the same information can simply be very confusing, scary, and frightening. So doctors tend to err on the side of caution and only tell us what we need to know.

Warning: Not for everyone

These tips and tricks will help you discover all the facts and figures about infantile spasms, but first ask yourself if you really want to know? – some of the details and statistics can be concerning.

Tip: Keep notes

When researching you’ll come across lots of information, so much so that you can easily confuse multiple points. Keeping good structured notes is the best way to help prevent this confusion. It also allows you to quickly look back and remind yourself of what you’ve found or to double check a point. David mentioned that it was very easy to think that you’ve read a fact, when in reality you’re confusing two reports. This can cause all sorts of confusing when your speaking to doctors. Keeping good notes is important and will help you avoid this.

Tip: Understand the Condition

It is important not to skip the basics. Doctors apply the asymmetric data exchange principle. They may have explained the condition to you, but it is important to do your own independent reading on it too. Think of the following key questions when doing your own research:
1. How does the condition show its self?
2. What happens if the condition is not treated?
3. How is the condition diagnosed?
4. What causes the condition?
5. Are there any related conditions?

Tip: Knowing your Doctors

It is important to understand your doctors area of expertise, is this an area that they are good at, or have an interest in? Doing some reading about your doctor will help. Searching Google or Bing for your doctor’s name and the name of the hospital will usually bring up some good information. When researching your doctor keep the following questions in mind:
1. Who is the doctor in charge of your child’s treatment?
2. What is this doctor’s background?
3. Have they published any papers on the topic themselves?
4. Where did they work previously?

Tip: Understand and Map the Treatment Plans

Treatment plans are structured methods of treating a patient for a condition. They provide doctors with a rough guide on how to address a condition. Treatment plans exist for a range of conditions, including Infantile Spasms.

The plans themselves are based on known research, and national guidance into the differing treatment options. They group the differing treatments into stages, a stage is often referred to as a “line”. The first stage, or “first line” will contain treatments which have been shown to be the most effective at controlling infantile spasms, with the least severe side effects. The second line will contain treatments which have not been as successful, or have worse side effects.

Research and national guidance differs around the world, consequently treatment plans differ from country to country. Understanding what treatment plans exist and what drugs are suggested will help when speaking to the doctor. It provides us as parents with information on alternative treatments which we can suggest. It also prepares you for the treatments which might come next, assuming the current treatment doesn’t work. This is important as it ensures that we parents are prepared when the doctor starts suggesting changes to the medication.

I’ve started the process of mapping treatments for Infantile Spasms on a page on my personal blog. It’s very rough at the moment, if you could provide information on what the treatment plan in your country is like, please do, and I’ll add it to the treatment plan page.

Tip: Research Papers – Search for RCTs

By searching for research papers you may find treatments which are not listed on the treatment plans, or additional background information on the treatments which are listed. But how do you know what research is good, and what is bad? Randomised Controlled Trials (RCTs) are experiments which are run by medical researchers. In a typical RCT a patient will be randomly assigned to one of two groups, the first group will be a group receiving treatment, the second group will be a group who doesn’t receive treatment. Typically, until the end of the trail the patient will not know which group they are in. If the treatment is a new drug, then both groups could receive a tablet. The tablet’s will look identical, except only the patients in the first group will receive a tablet with a drug in it. The others, in the second group will receive a tablet with no drugs in it.

Medical researchers use RCTs because the human body has the ability to trick it’s self into getting better. Patients who receive a tablet can believe that the tablet is helping them and can even make progress, when in reality the tablet is a dummy. What’s happening is that the patient will believe that the tablet will make them better and it is actually this belief which is giving them the boost, not the tablet at all. This is often referred to as the placebo effect, RCTs account for this in their experimental structure.

Searching Google for “Infantile Spasms RCT” and “West syndrome RCT” turns up a lot of research papers.

Identifying Centres of Excellence

Researchers in any profession will pick niche areas to focus on. This will be reflected in the RCTs that are available, you’ll find a lot associated with the same university or medical establishment.

Citation Loops

How do you tell good research from poor? – look for citations. Good research papers will get “cited” (listed) in other research papers. As a very rough rule of thumb, the more citations the better the research.

Pick up the phone

If you find a bit of research which you think might help, but you’ve got a few questions about it – then pick up the phone. Each of the research papers will list the individuals who worked on it, and the organisation for which they work. David explained that most are happy to receive phone calls about their work. So pick up the phone and ring, David said that they often walk through their research again and can go through in a little more detail, or can explain in plain English what they discovered. I asked David “Don’t they get upset receiving a lot of phone calls about this stuff?”. David’s response was sobering and enlightening, he simply said “Do you really care?”.

Tip: Be wary of Wikipedia

This was counter intuitive for me, because when I’m looking for details on an IT question Wikipedia is fantastic (perhaps that is because it is mainly updated by geeks).  Remember, that Wikipedia is a crowd sourced site and particularly when dealing with media information you should not to use it as your sole source of information, but should double check what you find using other sources.

Data as a Service for Social Change

They say that hindsight is always 20:20. It’s true. I’d been given 5 minutes in front of some of the most influential people and Europe to make my case, and 30 minutes after my nerve wrecking speech, I sat down and thought about everything I couldn’t cram into the 5 minutes I had been given.

It’s been a while since I shared the press release from the European Commission which highlighted the talk I gave and the work my team did as part of the EIT Young Leaders program. I owe you all an explanation of what I was working on, why I feel so passionate about it, what I said during the speech and what I wished I had the time to cover.

It was nerve wrecking as I stood up to join the other speakers on the stage, Kenneth Cukier, Economist editor and author of the big-data-book.com, Alfred Spector, Vice-President of Research and Special Initiatives at Google, and finally Gavin Starks, CEO of the Open Data Institute. I was nervous, these are big names and the audience was just as impressive, consisting of CEOs, CTOs, VPs, representatives from industry, EU Policy makers and European Commissioners.

You can watch a fantastic version of me talk, here on YouTube.

I had been given 5 minutes to talk about how Big Data can be used as a catalyst for social change. Months of work, research and internal team battles turned into just 5 minutes. It is an eternity when you’re standing in front of an audience, but in reality 5 Minutes is just less than three paragraphs of text. That’s not much to covey everything the 6 of us, on our team wanted to say.

The Unrealised Opportunity

When you speak to advocates of big data they all preach about how the computing power of today is cheap, digital storage is cheap and we’ve lots and lots of information about everything we all do every day. All we need to do, they say, is to study the data to see the great advances we can make. The problem is, when you study Big Data, to see lots of advocates, but not as many success stories. Why? What’s wrong with the Big Data industry? Why aren’t these fantastic opportunities being realised and what can we do about it? – This was the question which led the team and I on a fantastic journey.

Investigating the Obstacles

Data as a service for social change-Slide1

Image by sunsurfr: http://www.flickr.com/photos/sunsurfr/2825932918
Used under Creative Commons license: http://creativecommons.org/licenses/by-nc-sa/2.0/

Let’s depict a vision of the future; a vision we want to create. Picture a future beach, with this little boy. A little boy who has less chance of suffering from Cancer than anyone today. A little boy who has less chance of suffering from Diabetes than anyone today.

In the future we’ve taken 25 years of shopping habits for over 1 million people and combined it with health records to reveal lifestyle and dietary choices which increase the risks of diabetes and cancer. We’ve shared this information with this little boy and his parents and allowed them to change their lifestyle to avoid many of these risks.

This little boy also gets more time with his parents than anyone today. Because his parents spend less time in traffic than we do. They have a smartphone application which provides them with a forecast of road traffic before they leave the house.

Now we have the vision, my team tried to create it. Let’s start with the traffic prediction application, how could we build that?

Building the Future

Data as a service for social change-Slide2

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Used under Creative Commons license: http://creativecommons.org/licenses/by/2.0/

To build this application we need access to energy consumption data. The application combines electricity consumption data with traffic. As we all wake in the morning we turn on TVs, Radios, Kettles and showers. This causes a spike in the amount of energy that we use. This spike occurs between 1 hour and 30 minutes before we leave our house. This can then be used as an indication of when we will leave home and therefore what future traffic will be like. This electricity data exists, we know this – because the energy companies capture it to bill us, and the energy distributor’s capture it to ensure they supply the right amount of power to the right places at the right time. But it’s not freely available – in fact it is locked away.

There are initiatives which try to unlock this data. Schemes like Green Button in the US or MIDATA in the UK which allow individual users to download their data from energy suppliers. These initiatives are focused on providing the data back to the individual. Using these initiatives to power our application we would need to contact each house hold individually and ask for their energy consumption data. For a city like London this could mean asking 3 million households for their data.

As an entrepreneur I’ve a lot of ideas and very little cash, and asking 3 million people is expensive, and risky. There is a good chance that not everyone will respond – I won’t have all the data I need, and contacting 3,000,000 households is very expensive.

What if we could just ask the companies which already own this data? – The energy supply companies and the energy generators. It turns out that there are several issues making them reluctant to release this data:

  • Competitive advantage; what if we shared their data with a competitor. They would know who their biggest customer is?
  • Privacy issues; the energy company customers have provided the data only for billing and not for anything else, data should only be used for the purposes disclosed when it was originally captured.

Currently Open Data Initiatives focus on releasing data for free in a hope that this will spur innovation, and kick start ecosystems. But we haven’t seen a huge uptake in this area. There are a number of factors preventing this:

  • Data reliability: The data is supplied for free. Usually this is a best effort delivery. That sounds ok, until you realise that in order for this data to be used commercially it is important to have confidence in it. Essentially the open data community is asking developers to take a leap of faith, to trust their livelihoods, homes, and families will all be safe and secure based on the income generated by a best effort data release. That is a big ask.
  • Timely data: Open Data Initiatives often partner with data producers and manually scrub data of information which may contain individual data, or other commercial sensitive information. This process takes time and as a result a number of the open data Initiatives provide “canned data” from historical data sets. This limits the applications to which this data can be used. We couldn’t create a real-time traffic prediction application on this type of historical data alone.

What if we were to invert the question?

Privacy is also a concern; we don’t want nor need to pry into an individual’s details, in fact for our app, seeing an individual’s energy consumption data is next to useless. It is like looking at a grain of sand when what we want to see is the beach.

Big Data is by definition big, getting a copy of this data is expensive and slow, and we don’t need it. While computing is getting cheaper, and cloud computing is even more efficient, it is still not free and big data requires lots of it.

What if, rather than providing a copy of the data could simply get an opportunity to do some statistical analysis of the data. The data wouldn’t move it would stay within the owning organisation. We could create a software infrastructure which ensured that access to the data was safe and privacy compliant. It would reduce the cost of access for a small start-up, and address the privacy issues and mitigate against the risk associated in disclosing data seen as a competitive advantage.

Data as a service for social change-Slide5

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Used under Creative Commons license: http://creativecommons.org/licenses/by-nc-sa/2.0/

The data would be safe, but the statistical value of the data would be set free. We would liberate the value of the data.

Free as in Beer (which you have to pay for)

What I’m going to propose sounds, at first a little nuts. I think free data isn’t the right thing to base an ecosystem on. In fact I think it discourages the ecosystem from taking root. As mentioned above there are a number of problems with free data which prevent developers from taking dependencies on it. One of the best ways to address is this to pay for the data. Once money swaps hands, SLA (Service Level Agreements) can be put in place and if there is an error in the data, or it is provided late – then there is a rout of recourse and the developer can chase the data provider for recompense. This shared risk and charging model allows the ecosystem to grow. It encourages new data providers to enter the market and allows developers to more confidently base their family’s future on the data they provide.

Incoming Disruption

Data as a service for social change-Slide3

The electricity value chain

This charging model also has the opportunity to disrupt existing market places as it provides additional revenue and a new way for businesses in existing ecosystems to generate revenue. We considered the energy market place in Europe. Drawing the value chain for this market place we see the following:

Power generation companies which sell their energy on via power transmission companies to a Power Distribution Operator (DSO) the DSO in turn supplies the end user via the retail companies we all subscribe to.

For the purposes of our traffic prediction application it is the DSO which possesses all of the real time information we need. The DSO needs to load balance its network to ensure that the right customers get the right amount of power at the right time. To do this the DSO has real-time, live information about power consumption. However the DSO never gets to communicate this information to the end user.

Getting the DSO to release this information, even via the statistical analysis method described above would not be trivial. There are costs associated with it. To deal with this our team proposed the creation of a data broker. The broker could amortise the costs of the technology across a number of data sources. It would provide the marketplace for data services from a range of different industries and it would provide the data providers with additional revenue.

Data as a service for social change-Slide4

How the electricity and DaaS value chains work together

Adding this additional revenue stream into the originally presented value chain we get this: A situation where the DSO is generating income from two different sources. Of course similar additional revenue streams can be obtained by all of the energy companies in the original value chain. This could change the relationships between each of the companies and disrupt the current status quo.

As the broker expands into new industries it will create a market place of data producers which compete for data consumers. This competition should help ensure a low enough price point for the data. Keeping a low price point is important in order to encourage entrepreneurs to really become involved in the market place.

The key to obtaining this future – the future on the beach, is about allowing companies or individuals to come up with ideas, test them, fail quickly, or succeed in a big way. In order to do this we need to create a working ecosystem in which they can experiment. This will provide society with insights and benefits beyond what I or anyone else can outline, and will really make the vision of the boy on the beach a possibility.