For more lectures like this, see http://learn.patientsknowbest.com

1. Personal Health Records Dr. Mohammad Al-Ubaydli

2. The kindness of communicators is great. The Internet is great for communicators.

3. Communication is crucial in chronic diseases You have time to learn about your illness You have less than one hour per year with your specialist Lots of people are working together for your care You know more than anyone else does about your health

6. 1. Digitized data has big security risks Source: http://news.bbc.co.uk/1/hi/uk_politics/7103566.stm

7. You should pay attention to these risks

8. You should pay attention to these risks Clarkson said HMRC Data breach was a fuss about nothing so he published his own bank account and sort code details in the newspaper. All you'll be able to do with them is put money into my account. Not take it out. Honestly, I’ve never known such a palaver about nothing.

9. You should pay attention to these risks Clarkson said HMRC Data breach was a fuss about nothing so he published his own bank account and sort code details in the newspaper. All you'll be able to do with them is put money into my account. Not take it out. Honestly, I’ve never known such a palaver about nothing. Someone set up a direct debit which automatically removed £500 from his bank account to a charity’s. The bank cannot find out who did this because of the Data Protection Act and they cannot stop it from happening again. I was wrong and I have been punished for my mistake.

10. 2. But a lot of security objections are actually problems of consent

11. 3. We often only consider one half of security Did the wrong person access my data? Did the right person fail to access my data?

12. We often only consider one half of security Most healthcare websites have a Privacy Policy . Naturally, we do too. But at PatientsLikeMe, we’re more excited about our Openness Philosophy . It may sound counterintuitive, but it’s what drives our groundbreaking concept. You see, we believe sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. Source: http://www.patientslikeme.com/about/openness

15. A Lutheran revolution: patient access to PHRs

16. When you understand your notes, you switch from paternalistic medicine to participatory medicine

17. When you understand your notes, you switch from paternalistic medicine to participatory medicine The whole flight-deck design is intended to be operated by two people, and that operation works best when you have one person checking the other, or both people willing to participate Earl Weener, chief engineer of safety at Boeing Quoted by Malcolm Gladwell on page 184 of Outliers

18. Your doctor will thank you Source: Streamlining Hospital-Patient Communication: Developing High Impact Patient Portals by Mohammad Al-Ubaydli, Jacob Elo and Neha Mahendru with artwork by Docxn Hayes. The Advisory Board Company , 2007.

19. Your family CMO* will thank you * Chief Medical Officer

20. Your MP will thank you Seriously, the NHS creates a moral hazard

22. Rareshare.org : for (30 million) patients with rare diseases In rare diseases, the experiences of individual patients are valuable to patients and clinicians alike

23. patientslikeme.com The more you share the more you learn

24. PAERS : free to GPs to give free to their patients

25. healthecard : a secure copy of your medical records

26. NHS HealthSpace : excellent info but isolated workflow

27. t+ Medical: share data from your mobile phone

28. MyFamilyHealth : family health data... watch for GenSeq

29. 3G Doctor : £35 for video phone consult (I still find this amazing)

30. Interviews at podcast.patientsknowbest.com

31. Download: wiki.patientsknowbest.com Beta testers: [email_address]