Attended a hack day for NHS patients today (the Internet informed Patient Hack day at Churchill College Cambridge, run by the Arcadia project.) See photos
It involved "computer hackers" (actually very respectable people mostly paid by health services) trying to find ways of helping patients. Issues arising:
1 There are lots of apps there for collecting data but can they speak to each other to share data?
2 Filling in monitoring forms is boring but vital for diabetes sufferers- you can make them into an iphone app using something like "Chorewars"
3 Using Google Trends you can predict what illnesses people are seeking information (e.g. flu) about two weeks before the NHS statistics reflect visitor peaks for this.
4.Existing apps containing data include: Daytum, and Quantified self
5. A good example of a mashup is Predict
6. There is an NHS divide: Doctors use specialised information and NHS data is confidential and can only be mined by the NHS itself, whereas ideally there would be "throwing information over the wall" to liberate it for the use of the Public.
7. Very little feedback is gathered on Cancer patients: it was originally assumed they would not survive long enough to measure quality of life, adaptations needed etc.
8. Web apps vary between those which collect data on symptoms and provide taylored information such as the symptom checker on NHS direct and those which tell you about illnesses or about statistics for services available in your area.
9. Sites like "Patients like me" and the CRUK chat room allow patients to help eachother. It often becomes clear that doctors have not communicated well with these patients and they need more help.
10. The NHS should be used to gather information about its users and feed this back into the system to improve itself like some huge living organism. (Those in the room, reflecting the government proposals, did not seem the least bit concerned to learn what previous researchers had already discovered but only how they could use statistics to do their own research.)
11. Recent experiments showed that people often trust Tescos more than the NHS.
12. Some factors are difficult to quanitify into algorithms. It is very hard to measure quality in service providers. How do you record that a surgeon has a wobbly hand? If an incident happens, and the team respond well and use feedback to adapt services is that service better or worse than a service where no incidents occurred?
13. I was interested to meet two other people working on mental health websites such as the one I help run (http://www.thinkingdisabilities.org ) and who were interested in collaborating. One of them wanted to run a wiki to dialogue between those with mental health problems and employers, a very similar idea to our own site. She emphasised that it would be helpful if employers were open to a spectrum of availabilities rather than demanding a certain number of hours each week.
14. The hackers said they might think of a way to make it easier to help community webmasters such as myself to learn how to feed data from elsewhere onto a web page.
15. I left my power cable there. Has anyone found it yet?
It involved "computer hackers" (actually very respectable people mostly paid by health services) trying to find ways of helping patients. Issues arising:
1 There are lots of apps there for collecting data but can they speak to each other to share data?
2 Filling in monitoring forms is boring but vital for diabetes sufferers- you can make them into an iphone app using something like "Chorewars"
3 Using Google Trends you can predict what illnesses people are seeking information (e.g. flu) about two weeks before the NHS statistics reflect visitor peaks for this.
4.Existing apps containing data include: Daytum, and Quantified self
5. A good example of a mashup is Predict
6. There is an NHS divide: Doctors use specialised information and NHS data is confidential and can only be mined by the NHS itself, whereas ideally there would be "throwing information over the wall" to liberate it for the use of the Public.
7. Very little feedback is gathered on Cancer patients: it was originally assumed they would not survive long enough to measure quality of life, adaptations needed etc.
8. Web apps vary between those which collect data on symptoms and provide taylored information such as the symptom checker on NHS direct and those which tell you about illnesses or about statistics for services available in your area.
9. Sites like "Patients like me" and the CRUK chat room allow patients to help eachother. It often becomes clear that doctors have not communicated well with these patients and they need more help.
10. The NHS should be used to gather information about its users and feed this back into the system to improve itself like some huge living organism. (Those in the room, reflecting the government proposals, did not seem the least bit concerned to learn what previous researchers had already discovered but only how they could use statistics to do their own research.)
11. Recent experiments showed that people often trust Tescos more than the NHS.
12. Some factors are difficult to quanitify into algorithms. It is very hard to measure quality in service providers. How do you record that a surgeon has a wobbly hand? If an incident happens, and the team respond well and use feedback to adapt services is that service better or worse than a service where no incidents occurred?
13. I was interested to meet two other people working on mental health websites such as the one I help run (http://www.thinkingdisabilities.org ) and who were interested in collaborating. One of them wanted to run a wiki to dialogue between those with mental health problems and employers, a very similar idea to our own site. She emphasised that it would be helpful if employers were open to a spectrum of availabilities rather than demanding a certain number of hours each week.
14. The hackers said they might think of a way to make it easier to help community webmasters such as myself to learn how to feed data from elsewhere onto a web page.
15. I left my power cable there. Has anyone found it yet?
Comments
Now I only have to bridge the Anna/Cable divide. I'll think of a way to throw it over the fence somehow.