EPR vs Content Repository and Apps - Is it a losing battle?

EPR's are massive undertakings to procure, implement and maintain.  They are also hugely expensive and demanding on valuable clinical front line staff to implement.  These statements are well evidenced in many publications and research over the years, yet still we see hospitals, regions or even countries chasing EPR solutions, usually from a single vendor to get over interoperability fears.

But, I see a shift in thinking starting to emerge and I for one think its both exciting and beneficial to all of the stakeholders.  The move is towards a structured repository of content which would typically include patients historical and future notes, medications, alerts and care plans etc.  Standards such as IHE XDS will facilitate development, procurement and implementation of best of breed departmental systems that can function in isolation but publish or access beneficial content such as results to/from the XDS Registry and Repository if necessary.  This is not so new now, but what is interesting is the rapid pace in which industry and clinical users are embracing mobile device based "apps" to access or record new content in real time.  This can include patient vital sign observations through to personal monitoring devices that populate an app managed by the patient in the community setting and uploads data to the central repository.

Whats really exciting about this is that clinicians and industry from start-up innovators through to more seasoned apps houses can now participate in contributing to the Health IT sector with a realistic chance of being able to sell and implement the solution, having being able to focus efforts towards addressing a specific demand in an agile and affordable manner.  The nature of the app means that implementing it, maintaining it and ultimately replacing it in the long term is a lot less disruptive to an organisation and the end to end costs are likely to be much less than having to add or modify modules to an EPR and testing/validating all of the interdependencies.  Adoption of the app is also more likely given its focus on a task or function and the familiarity that most health practitioners and patients have with this technology today.  The training and change management costs are also likely to be much less than inclusion of similar functionality in a much larger traditional EPR type solution.

If companies/developers and health providers can abide by some of the logical demands as defined by the NHS ISB for example regarding consistent location and format of content such as patient banner and also nail down consistent use of descriptive terms and nomenclature then there are few reasons why the use of apps in mainstream healthcare won't continue to flourish and start to threaten the big EPR players in the market.  Clearly this is something that Apple™ have recognised with the release of the Healthkit and enhanced capabilities of their OS.

Its great to see the innovation, and larger vendors must be mindful that customers want to see innovation and solutions that can be developed and implemented in an affordable, agile manner. Standards based exchange of content via Web API interfaces is the future and its great to see some of the companies starting to embrace this reality.

Its my belief that use of Apps that fulfill a specific requirement for a target audience will become mainstream, underpinned by standards based interoperability and a repository(s) of structured content facilitating the various apps based access points to that content.   The idea of a monolithic EPR solution seems out dated already and I think its days are numbered as is the appetite for them; financially, technically and operationally.

What do Personal Heath Records (PHR's) and George Orwells 1984 have in common?

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.

Google Plus as my EPR?

So this is my first post to my own blog and this is really a space to share my thoughts and ideas and see if anyone else has some traction or view on them.

My thoughts this morning turn towards maintaining and accessing a patients record, more particularly my own health record.  There are many solutions/apps now to capture all sorts of  information from a smart phone or tablet and also very mature messaging standards such as HL7.   There are also many technologies that allow information to be stored and shared on line and increasingly with more capability around access control.

So, am I being simplistic when I explore some of these technologies (as I have started to do more recently) and join these dots together .........the first dot if you will is the recognition that in most western countries we can access the internet almost anywhere.  I can have an account such as google plus, create some circles which effectively manages my access control and consent issues and upload data from my health practioner to my google plus account and share it as I see appropriate.  Ok it may benefit from some dedicated indexing within the google space which I am sure google could manage.  I can use the camera to capture data but I think health providers should record my google plus account information in their PAS systems and upload either my content or hyperlinks to my content which they maintain on my behalf.  The fact is that most data is digital or can be made digital.  Why not make it bi-directional so that I can upload content and get an opinion or even refer my record to get a second opinion. I could also save trips to the hospital to get my wound checked by uploading images from the comfort of my own home and steer them towards my care provider even using notifications to alert people of their availability.  It should even be possible to start utilising home based diagnostic or monitoring equipment docked or worn about the person and wirelessly upload this data periodically or in real time to my on line health engine which in the future has the ability to create workflows automatically as abnormal results/observations are detected.  You can see the benefits for those with disabilities, of chronic ill health, for the elderly or for those who want to keep close tabs on their health maybe as part of a training plan for a sporting event like a marathon.

So let's look at the benefits.  Well most headaches around data regard access and consent and to my mind we are building increasingly more difficult hurdles to jump as those guardians responsible for data protection feel obliged to protect data almost now at the detriment of being able to usefully access it when required .  I travel a lot and God forbid it is possible that I may need to seek medical attention anywhere in the world.  I also want my health record to be longitudinal and reflect my history from birth to death, so yes I am suggesting that parents create accounts for their children, even if they start with capturing jabs etc as it really helps in later life when the child becomes the adult and doesn't have to hunt around the attic looking for an inoculation card from 20 years ago.  It would also be useful to capture boosters, travel meds, tetanus etc.  I'm sure you get the drift and can also then link this record to driver license maintenance, employment screening for occupational health such as eye sight tests.   When you actually put your mind to it the benefits of linking data availability to consumption can have loads of benefits.   Just one other example that springs to mind.  I had an uncle with diabetes who wore a bracelet indicating as much. If you replaced this bracelet with a physical digital key that a paramedic can use to access this patients record on line in the shopping centre should they become disorientated due to  hypoglycaemia then much more specific and relevant care could be provided much earlier which is vital in an acute siutation.  Sadly as my uncle become more elderly and living alone he became less able to manage his blood sugars and ultimately died as a consequence of entering a diabetic coma.  If technology such as the contact lens that will check blood sugar levels automatically or other similar monitoring technology was available and more widely used then people like my uncle as well as those that cared for him would undoubtedly have benefitted.

It is also demonstrable that health providers will benefit. You could potentially shift a lot of the ownership of records to the patient along with the responsibility.  Most patients will ensure they keep this well maintained.  Billing and compensation could also be speeded up as the data along with potential e-claim forms could be completed and submitted on line resulting in faster compensation.

I would also argue that google is already part of many peoples health plan, how many of us google an ailment and self treat as a consequence .... I don't have the data other than anecdotal through conversation but since becoming a parent I can testify that googling a symptom and acting accordingly not only saves me a fortune in GP visits but no doubt saves the state as well.  Don't get me wrong, visiting a GP or A&E is always going to be the backstop should you be concerned and common sense is always required in judging when to consult a medical practitioner in person.

So, this is my brain dump on this matter for the moment at least.  I know some big companies such as Microsoft have considered Health Vault technology but my feeling is that stakeholders from within the industry and the benefactors such as those suggested above need to drive this forward as arguably a national initiative is required with some IT giants of this world such as google and let the industry players align accordingly.  Interoperability between hospital systems which themselves are maintained in isolation is not the future in my opinion!  The patient and the public need to become more responsible for their data and how it gets used in this world where increasingly the funding for care will be allocated directly to the patient or their GP and they will pick and choose where to be treated based upon availability, competence and budget.