In the past 6 months I have gained further first hand experience that supports some of the discussion points raised in my previous post around Personal Health Record (PHR) management.
I've seen an interesting posting by Dr Mohammad Al-Ubaydli where he also shares the view of the public maintaining their own records http://www.patientsknowbest.com/videos.html and has gone as far as setting up his own company which has gained some traction in the UK and the USA. I don't accept the view that a patient has or can be asked to have an implied obligation to question the doctor about the contents of the record and in so doing the doctor is relinquished of some of the responsibility in determining that the diagnostics are correctly interpreted and acted upon in their entirety which includes incidental findings. I do however accept that incidental findings are often identified but not acted upon as the requesting physician is focused on interpretation of contextually based findings to the physicians specialty. That said, I have also seen the development of safeguards to such things as incidental findings where a radiologist can alert a cancer control office of a likely incidental oncology finding as part of the reporting process for a non-oncology referral, enabling them to ensure the followup is provided. Applications such as RadAlert by Rivendale Systems (http://rivendale.ie/index.php/healthcare/radalert) have been successfully deployed in large academic hospitals such as Cork University Hospital in Ireland to address these findings with published results evidencing the success of such solutions at RSNA 2011.
NHS England is further building upon this demand by trying to enable patients to access their GP records on line by 2015 http://www.england.nhs.uk/ourwork/pe/patient-online/ but how prepared the GP practices are for this I don't know. How complete the record is may also be questionable as results and content can be provided to the GP practice system in various forms, i.e. email content, email attachments, HL7 interfaces from distribution systems/medical gateways and of course paper based information posted or faxed to a practice. The dependency from a patient perspective is that the GP system is correctly maintained, fed information in a complete and timely manner and accessible by the patient and by persons that the patient wishes to grant consent to.
In my brief trawl of the web it seems that adoption rates of PHR are low, and this I think is understandable as fortunately the vast majority of the population are well. Interactions with medical care usually occur in an acute setting and previous medical history for the most part does not influence the care given in the acute context. Acute care is often provided and concluded in a short period of time and can be largely summed up as an inconsequential event in the overall health for most acute encounters in most peoples eyes. The effort vs benefit of adding all the care provided in an acute setting to a PHR does not stack up for most members of the public. For more mid term care that arises from an Acute event such as RTA with multiple complex fractures and injuries that might involve months of complex surgeries and rehabilitation in specialist and community settings then you can more readily anticipate that the patient would benefit from a PHR that they can share with the various stakeholders throughout the care period. There are also likely financial benefits for both the care providers and the patient as the costs associated with such an encounter are likely to be high and therefore reimbursement to the care provider or to the patient if funding the care via insurance becomes more important. Access to the medical records also means a more speedy encounter as clinicians in the care pathway can be more readily prepared in advance and expensive and harmful diagnostics do not need to be repeated as a consequence of unavailability.
The increasing number of screening programmes that patient's participate in would in my opinion benefit from a PHR as the screening capability is increasingly more likely to be provided as an outsourced service and therefore the screening encounters will become isolated encounters, but with clinical dependencies to access previous findings for comparison (as in Breast Screening). Government agencies will increasingly run public procurement's for such services (as well as resulting elective interventions for positive findings) on a regular basis and adopting a PHR can avoid costly data migrations whilst allowing a competitive value and technology driven market to flourish. People/ Patients are increasingly becoming more elderly whilst maintaining health to a greater age and therefore remain mobile for a longer period of time. Increasing ages for retirement will mean that these elderly people will move around and will need to maintain the continuum of screening independent of geography and provider. It is also likely that patients will want to "shop around" for care in the future based upon quality and financial indicators and metrics.
The same can be said of chronic disease management and I increasingly anticipate with the evolution of devices located in peoples homes, about their person and even in time internally situated to be remotely monitored and even care to be in someways automated. An example is insulin dependent diabetic patients that could wear a device that monitors blood sugar and automatically administer the appropriate dose of insulin internally from an embedded insulin reservoir (at least conceptually as im not sure of the shelf life of insulin but you get the gist) and there are similar parallels already used in cardiac pacemakers where a shock can be delivered automatically. The device can report the event to an external system and can be managed remotely. It is therefore probable that in years to come we will see call centres and monitoring companies that will manage the various streams of data coming from potential PHR connected devices that run silently in the background, much like we see with security cameras and call centres protecting properties today.
In summary I believe that PHR's will become mandatory in the future and just as we get issued a social security number today I can see the day when we will be issued with a national/global PHR account that is completely web based, which will communicate with other government agencies via a Health Exchange Portal and which will provide the basis for much more predictable healthcare expenditure based upon real data, an aging population and research based upon large population numbers. Clinical trials, pattern recognition and data analytic's will increasingly determine budgets, treatment and preventative healthcare strategy in the future. It may also controversially provide justification for treatment denial or withdrawal (but that's a whole other can of worms to explore separately)
The effort and finance that is being invested in making hospital based systems interact in a local, regional or national context is therefore wasted in my opinion and if the same effort and revenue could be steered to a mandatory PHR for citizens instead then the needs of the future would have a much higher likelihood of being addressed in a pragmatic and affordable manner. There would also be spin off benefits that would allow other government departments to operate in a more streamlined manner.
George Orwell's 1984 looks increasingly similar to the healthcare and associated governmental agencies landscape in my opinion based upon what I have laid out above and see of the evolving health related technology landscape and Im not sure everyone has quite considered the implications of adopting and implementing all of this technology for the future generations and what this might actually mean when you apply for health insurance, a mortgage, a job etc.....
On that sobering thought I would be interested to hear from people that have used a PHR (a product or a home made solution such as Google Plus account) and their opinions/experiences. I would also be interested to hear from thought leaders in this area especially with a background in related technology/services provision, the ethics of data interoperability and what this might mean for the future generations and also government strategists on whether they agree or disagree with my thoughts.
