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?
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?|
- 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
- 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
- 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