Politicians badly briefed about data issues too?

At the end of the Parliamentary meeting on 'Patient rights and access to NHS data',
Parliamentary Under Secretary of State for Public Health, Jane Ellison MP made the following statement:

"I should actually just before we close put on the record Mr Emerson, forgive me, but I think it is useful for colleagues, just in regard to the Faculty of Actuaries and the data there, and I think actually the Shadow Minister also alluded to this; just to put on the public record that the data that they used was publicly available, non-identifiable and in aggregate form."

This data as described in this blog post was not publicly available or in aggregate form. It was individual-level data that had to be specifically asked for from the NHSIC. 

Jane Ellison may have been referring to the report generated from the research done which is indeed publicly available, with aggregate analyses from which it would be impossible to identify an individual. But no one has concerns about the report.

You can watch her statement here at 16.16.30

We need data literate journalists.

So what do you think happened recently with NHS data? Do you think that the NHS handed over the records of millions of patients to insurers who then looked up their credit records and suggested that their insurance premiums should be changed?

That would be awful wouldn't it? Just as well it didn't happen.

I came back from visiting family on Sunday night to see the  Telegraph  story "Hospital records of all NHS patients sold to insurers" being tweeted.  It was picked up by many other papers including the Guardian.

The story is about research done by a group of actuaries, the Critical Illness Definitions and Geographical Variations Working Party . You can find the full report here.  It's a 200 page plus document written to explain to other actuaries how 'geodemographic' data might help predict how likely someone is to develop a critical illness.  If you have ever applied for life insurance or critical illness cover or an income protection policy you would know that you your policy is priced based on what your risk is... your age, weight, smoking status, what illnesses you have. If you know anything about health inequalities you will know that beyond our own personal risk factors( age, weight etc) our social circumstances are important in determining how long we will live and if we will get sick. And you can tell a lot about our social circumstances from where we live. The relationship is so strong that there is a postcode mortality lottery Your postcode *might* reflect your lifestyle, your wealth, your education- all the things that predict how likely you are to get sick or to live long.

Geodemographics , CACI's Acorn, and Experian's Mosaic , classify postcodes into strange-sounding groups like 'happy families' and 'twilight subsistence' based on information obtained from public and commercial sources. The research by the actuaries was about whether these postcode classifications could predict when people developed serious illnesses. You can read the report to find out more but the short answer is that they do.

You may disagree with the idea that you postcode should be used to predict your risk to insurers. Is it a smart way of doing things? You can read some discussion of this in Tony Hirst's blog post here.

Most of the discussion was not about this though. It was about the fact that 'hospital records' were given to insurers.

So what actually happened in the research? 

"patients' medical histories, identified by date of birth and postcode, were combined with credit ratings data" http://t.co/oRhzGgazvt
— roger kline (@rogerkline) February 24, 2014

The above tweet by Roger quotes the Guardian's coverage of this story. Are Acorn and Mosaic 'credit ratings data'? Well, yes, they may have been originally  developed to predict how likely you were to be able to pay back a loan. But as we can see they can also predict how likely you are to get sick or to die.

What did the hospital records look like? There were Hospital Episode Statistics. This is what the data looked like (from this presentation)

Is that what you thought the 'hospital records' would look like?

Did the researchers have full postcodes and dates of birth? It was a bit hard to tell this from the report. I presumed they didn't because I didn't see why they needed it. And I didn't think that the NHS was likely to give away information that would make it easy for individuals to be re-identified. But the full postcode was needed to be able to assign a 'geodemographic profile' to each person in the dataset. The following screenshot is from page 10 of the report.

I read this as meaning that the geodemographics were added to the HES dataset by the NHSIC who provided the dataset to the insurers. But others, including Tony Hirst, first read this as meaning that it was the researchers that did the datalinking. Who did the datalinking was important because who ever did it needed the full postcode. 

Today after reading an article by Wired in which it is stated the hospital data was given to the Institute and Faculty of Actuarie IFOA and "was then combined with secondary sources, including Experian credit ratings data, in order to influence insurance premiums." I decided that I had to find out. So I phoned the press office of the Institute and Faculty of Actuaries (IFOA) on the number I found on the press release of their rebuttal to the Telegraph article.

I got straight through. The press officer directed me to page 10 above. I asked who had done the datalinking and they said it was the NHSIC. This made sense and fitted with their statement that they had no identifiable information for the individuals in the dataset. They only had an age group, and the 1st part of their postcode.

So how many people do you think contacted the IFOA to try and make the same clarifications as me? Every journalist that had written a story about this perhaps? No 3 people. The BBC and two bloggers. I was one of them. 

Why didn't other journalists get in touch with them? Didn't they understand the significance of this? Didn't they care?

In the next few months and years we are going to be having many conversations about big data. We need to have journalists who know how to ask the right questions. And at the moment it looks as if we haven't.

If you think that the problem is that actuaries were given NHS data at all then see this.
EDIT In the past GPRD data was provided to actuaries. This is no longer the case although at least one application was made recently to CPRD. They rejected this.
 

The benefits of social media for researchers...

You can vote here 

How to create a great curriculum map without wasting a lot of time : Repost from @mededportal by @one45software

All of MedEd Portals resources are creatives commons licensed but you have to register for a free account and log-in to license them. I thought I would share this brief 'fact sheet' on curriculum mapping because it is something that has come up a lot in the LinkedIn group on technology in medical education that I started. Here are some of the threads discussing curriculum mapping from that group.
The factsheet is written by Brian Clare, CEO of One 45 software. I like the style that it is written in and the acknowledgement that curriculum maps are rarely started from the desire to make it easier for students to find content which seems a downright tragedy.
What are your thoughts on what he says?
...................................................................................................................................................................
From MedEd Portal 

Curriculum mapping is a process that holds the potential for great rewards, but it carries many risks. One of the biggest risks is that it will be a giant waste of time. In our work with clients, we often see ambitious curriculum mapping projects fail because the final result was just not useful enough. In this guide we will share some practices that will help ensure your curriculum map is not only LCME-compliant, but is continually updated and useful too.

 Make the curriculum map useful for students

 To some, the curriculum map is purely administrative overhead to ensure LCME compliance. To others it is a useful planning and reporting database used to inform curriculum changes. But almost never is it a tool for students to find and reference content and learning objectives.
This is a mistake. In our experience, schools that make their curriculum map useful for students enjoy a map that is more comprehensive, updated more frequently, and used more by faculty and administration. This occurs because of the natural adjustments that faculty and administration make to match their processes up with student behavior.
To begin making your map more useful to students, a great place to start is with exam objectives. Survey your students and ask them which reports about the curriculum would help them study for their exams. Or, ask them which parts of finding curriculum content they find frustrating. These answers will help you discover valuable curriculum mapping changes to make. You could include a question about this on your end-of-course survey.
Once you’ve got an idea what students are looking for, try mapping a course or two to its exam objectives. Have a small group of students report and search before their next exam and see if the new mappings addressed their issues. After a few rounds of this process, you’ll have an idea of a valuable set of curriculum mappings to make. This will lower the risk of creating mappings that no one uses.

 Use data on report usage to drive updates to the curriculum map 

Our data shows that users perform curriculum searches far more than they navigate the curriculum. If your system allows for it, gather data on the types and frequency of searches users are performing. Periodically, ask the users doing these searches what other data they’d like to find. This feedback is invaluable at curriculum committee meetings as it provides qualitative and quantitative data to help justify changes to the curriculum map.
 For example, if someone suggests linking competencies to session objectives, and the usage data suggests this might be a good idea, start small. Link the competencies to the objectives for one course and see if the changes increase search usage or user satisfaction. If they do, fantastic! You have a compelling reason to change your map. If not, fantastic! Now you can work on a different initiative that will have more value and you haven’t wasted any time.

Add more detail in small increments 

If you focus on making the curriculum map valuable for stakeholders at every step, you’ll have an enviable problem: people will want you to make the system even more valuable for them. For students and faculty, this may mean making reports easier to generate, or more specific. For your curriculum committee, this may mean adding more detail to the map.
If you are considering changes to your curriculum map, focus first on testing that the changes will produce value for your users at a small scale before rolling them out full-scale. This means mapping one course instead of 10, or having a few students generate reports while you watch them work, or creating a test installation of your curriculum map where you can play around without worrying about making mistakes. Your goal with these small scale experiments is to get the users excited about the results. Whenever a suggestion is made to change the curriculum, try and ask “how can we test that this will add value?”
Proceed carefully, and try and match your curriculum mapping efforts with the most valuable use-cases for those efforts. We hope that by doing this you’ll find greater success and buy-in from students, faculty, and administrators. Good luck!

Asking women to speak at events...

I have been involved in organising a few events recently  - Digital Doctor and NHS Hack Day Both are a bit techy and geeky - and I have been acutely aware of  issues of gender balance. Men tend to volunteer to speak. Women more often have to be asked.

People are doing something about this.  Last year I spoke at the first 300 seconds -an initiative to get more women speaking up on tech- started by Sharon O'Dea, Ann Kempster and Hadley Beeman. It was a great experience. It took me out of my comfort zone. Speaking to a digital/techy audience about why I was personally driven to engage in a social media as a doctor was a new challenge, but the audience and atmosphere was supportive and all I had to do was volunteer (after being tipped off about by the lovely Louise Kidney who I have still to meet).

My friend Nicholas Whyte, an independent diplomat, wrote last year about his awkwardness at turning up at a conference, chairing a session and finding that no women were amongst the 22 panelists and moderators at the event. So he says that he will not participate in an event where this happens again. There have been other calls for men to take this action.

The biggest medical education conference in Europe is AMEE in Milan this summer. The provisional programme includes 3 plenary sessions with 7 speakers. All the speakers are men. Only one of the 3 plenary sessions is chaired by a woman: Trudie Roberts, President of AMEE.

I think that as women we have to take responsibility for this too. We have to make the organisations that we are part of aware that we think that having women prominently represented at the events that we attend is important. If we are organising events we should make clear to our co-organisers  that having women speaking is important.

And if we are asked to speak we should try and say yes. It is easy to think that we are not qualified, or there is someone better. Say yes and have a good chat with the organiser; ask them to tell you about why you will be a great person to speak to their audience.

This isn't about having women speaking just for the sake of it. It's about having the best people speaking. The best people are very likely to be women so if your event doesn't have women speakers something has gone wrong.

Everyone who speaks at 300 seconds deserves a wider audience. And it's not just the tech sector that have to think about this. Watch Lily Dart!

Edit: Response from AMEE twitter feed

@e_hothersall @amcunningham Careful consideration is given to the choice of speakers from nominatations, we aim to balance gender if we can.

— AMEE Online (@AMEE_Online) February 10, 2014

@e_hothersall @amcunningham We are sorry that male plenary speakers have dominated the #amee2014 prog. We are reviewing for #amee2015

— AMEE Online (@AMEE_Online) February 10, 2014

And 'female conference speaker' bingo