Hi I'm Linda Davidson, director at EHI. I'm planning a session on patient access to records at EHI Live in November so I'm interested to gather views and identify speakers we would like to hear at the session.
What I would most like to do is explore not only how the health system can facilitate access to records but what happens after that and what the possibilities are.
There are challenges, ensuring identification of the patients - sharing identity etc. Most important perhaps will be the need to ensure that there is supporting properly targeted knowledge to support understanding at the right level for the patient e.g the needs of a 15yo diabetic are very different to those of an 85yo.
I am Brian Fisher, co-director of PAERS Ltd a small software company that has made it possible for all EMIS practices to offer their patients free secure online access to their GP record. I think that we have responded to most of the problems that the GPC recently identified. Our published research shows that pts gain a lot from record access, particularly where it is linked with transactional services such as appt booking and links from their data to pt-centred information.
The majority of the population is - or considers itself to be - healthy: for these people there is very little point in accessing a record which holds very little information if any.
Where Patient Record Access *is* useful is with patients who have complex or on-going conditions - as Brian and Amir Hannam have shown.
One of the problems I foresee is the fragmented care proposed by the development of multiple pathways provided by a variety of AQPs: will patients have access to their records as well?
Brian and David, is there ant reason why PAERS could not work - or be made to work - for other systems as well as EMIS, and other primary care systems e.g. RIO?
I assume there are very few - if any - secondary care systems available for patients too view..
If I were a patient, I would like access to my record. It would build safety nets to ensure any critical results--lab/radiology etc were acted upon.
However, the problem for NHS is the technical delivery of this. Multi-vendor systems in NHS produce various elements of a patients record. Common standards are needed to be adopted by ALL vendors for such an aspiration to become a reality.
Gobal standard XDS & XCA have capabilities of providing a patient portal that crosses organizational boundaries of primary, secondary & tertiary care. NHS must see benefits of adoption of common vendor neutral standards like XDS & XCA.
I am the lead on a TSB (Technology Strategy Board) project called miConsent, which is exploring how best to allow patients to give consent for named and trusted other people to have access to their records. The idea being that the patient could allow a third party, who they trust, to review aspects of their records, such as previous lab results or medication history. This third party could be a relative, a carer, a clinician or even a researcher.
Hi Tim, that sounds like an interesting project, what are your time frames for reporting back to Govt on this? What kind of research are you doing about third party access? That was one of the big issues identified as a concern by the GPC who said that patients could be coerced in to letting third parties such as lawyers or their insurance companies access their records and then use the information against them - is this something you're considering?