Lightning talks

Discussion

Leaders from around the world

• Kaiser and VA are two best
• UK is probably third best
• Estonia is starting a national program

How do we raise awareness for the possibilities among the different user groups?

• Clinicians
• Patients
• Carers
  

What does the consumer want?

• Trust: Patients want trust before they feel confident enough to engage
• Utility: PHRs are not a means to an end, not the end itself

Study from Mark of 5000 patients in Health Engagement Barometer

• interested in health care and searching for them on the web
• want organizations to engage them proactively
• want engagements on how to improve health care and wellness
• "UK was least engaged in health care"

Positive (+)	Negative (-)
Engagement... but as more engaged, actually build up trust	Mistrust: security and privacy (not the same as security)
Utility	People who are well are simply not interested in PHRs
Must find the patients where they are: Bebo, TV, mobile phones, XBox, proxy (GP, family member) etc. No single ways.	Liability: who is responsible when information is streaming in multiple media?
Submission of data from patients much higher through mobile phones	Provenance: what do you about patient-submitted data?
Participatory medicine needs data submission	Do you trust data from a home monitoring device?
What is the killer app rather than forcing the patient to use this through incentives? Disease management for the chronically ill. Patients instantly understand this.	What will insurance companies with the information?

Useful suggestions

• examples from iPlato: patients answer their GP's questions on their mobile phone in 50%. Also reduce DNAs, costs of data capture.
  
• intervene as population feels worried: this is in waves, so catch when they are worried
• games are powerful: e.g. Wii Fit
• lots of other layers can be added later as passively build up first layer through games
• provenance of patient-submitted data is the same as that with taking a patient history
• linking data in PHR -> advice
• patients instantly see the advantages
• some evidence that get better health outcomes and fewer visits
• must address trust head-on - give the control over the record's spread and usage to the patient
• segment the market into wellness and disease management - different ways of approaching these are necessary
  
• segmentation over age, time, and other dimensions
  

Regulatory framework

• well-established financial arena
• if you use the PHR on stick, people will stop using it
• in Germany, the governmentnt is incentivizing the population to use the PHR through a trial with 7 million patients and a health insurance company
• the PHR will force the issue on life insurance (the issue is being avoided at the moment)
  

How to do you convince the clinicians?

• advantages for patients, yes, but clinicians are instinctually terrified (Brian has a list, including moral panic, litigation, worried well, consultations will take longer)
• key legal problems, e.g. information they should not be allowed to see, or information that clinician should not show to patient as it is dangerous to their health

Useful suggestions

• financial incentives to take part in the wellness of clinicians
• collect case studies on ICMCC or wiki.patientsknowbest.com
• explain that increased access reduces health usage - e.g. from VA evidence
• fundamentally, the problem is that this is about power sharing: participation rather than paternalism. Clinician now has to start trusting the patient. If we get there, it will be a whole new world of health care.
• Clinicians are only with the patient 1 hour per year - the rest of the time, the patient is by themselves
• hospital clinicians have different environment altogether

Wrap-up