Personal health records presentation at Cambridge Refresh

Personal Health RecordsDr. Mohammad Al-Ubaydli

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

Communication is crucial in chronic diseases You have time to learn about your illness

You have less than one hour per year with your specialistLots of people are working together for your care

You know more than anyone else does about your health

So why aren't more people using the Internet to communicate about their chronic diseases?1. genuine security problems– confusing consent with security– only thinking of one half of security– not knowing that you can communicate– not knowing how to communicate

1. Digitized data has big security risks

Source: http://news.bbc.co.uk/1/hi/uk_politics/7103566.stm

You should pay attention to these risks

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.

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.

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

3. We often only consider one half of securityDid the wrong person access my data?

Did the right person fail to access my data?

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

4. Not knowing you can communicateThis is why we created http://wiki.patientsknowbest.com

• New to PHRs? Read our guides for patients, hospital executives, CIOs, programmers, clinicians, researchers 

• Same license as the Wikipedia. When you find something missing, please help us fix it• We also have a podcast: interviews with PHR innovators at

http://podcast.patientsknowbest.com

5. Not knowing how to communicate

3 questions for your clinician 1. What are we doing?• Why are we doing it?• What happens if we do not do it?

Get a copy of your PHRThis makes it much easier for you to think of good questions before your meeting and to remember the answers after the meeting

A Lutheran revolution:patient access to PHRs

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

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 BoeingQuoted by Malcolm Gladwell on page 184 of Outliers

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.

Your family CMO* will thank you* Chief Medical Officer

Your MP will thank youSeriously, the NHS creates a moral hazard

Tools you can use

Tools built around opennessRareShare.org PatientsLikeMe.com

Be careful• divulging your identity is easy• returning to anonymity is impossible• Google remembers everything

Tools built around privacyMyFamilyHealth: your family tree

healthecard: store records on a card

PAERS: access your GP’s records

NHS HealthSpace: upload your notes online

t+ Medical: records from your mobile

3G Doctor3G video phone consult (seriously)

These are world-class pioneers innovating in UK and Ireland

Rareshare.org: for (30 million) patients with rare diseases

In rare diseases, the experiences of individual patients are valuable to patients and clinicians alike

patientslikeme.com The more you sharethe more you learn

PAERS: free to GPs to give free to their patients

healthecard: a secure copy of your medical records

NHS HealthSpace: excellent info but isolated workflow

t+ Medical: share data from your mobile phone

MyFamilyHealth: family health data... watch for GenSeq

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

Interviews at podcast.patientsknowbest.com

Download: wiki.patientsknowbest.comBeta testers: [email protected]