A room with a view: the future of EMR and patient support – information theory

Alex Butler

Janssen

Continued from “A room with a view: patient centricity

With the majority of the discussion over the last couple of weeks focussed on the launch of Google+ I will once again demonstrate my fingers lack of proximity to the pulse by talking about an offering launched to great publicity in 2008, Google Health. More specifically though a number of conversations held with the #hcsmUK &amp, #hcsmeu community confronted the questions, is the true revolution at the heart of social media not necessarily communication but the capacity to generate and utilise ‘big’ data? Secondly, will issues of privacy kill at birth any attempt to bring personal health information and support together for patients online?

We, I am sure you will readily agree, live in an ‘Information Age’. If we look at the Wikipedia entry we are told the following:

“The information age, also commonly known as the computer age or information era, is an idea that the current age will be characterized by the ability of individuals to transfer information freely, and to have instant access to knowledge that would have been difficult or impossible to find previously. The idea is linked to the concept of a digital age or digital revolution, and carries the ramifications of a shift from traditional industry that the industrial revolution brought through industrialization, to an economy based on the manipulation of information”.

“…will issues of privacy kill at birth any attempt to bring personal health information and support together for patients online?”

It is an interesting paradox therefore that the concept of information itself is both intangible and elusive. People continually confuse information with data and more worryingly with knowledge. Data can be viewed as the lowest level of abstraction from which knowledge and information is evolved.

In truth though the branch of applied mathematics that deals with information theory, the foundation for all modern digital communications, does not make any connection between information and ‘meaning’.

So you may ask, what has this got to do with Google Health and the future of Electronic Medical records? Google recently announced the ‘retirement’ of Google Health scheduled for the 1st January 2012 and in my opinion this dislocation between information and meaning is at the heart of why the project failed to capture the public’s imagination.

In essence I believe that Google failed to bring meaning to data. Rather than being the death knell to the electronic medical record (EMR) and personal health record (PHR) it could be the turning point. People do not want a repository of their data, they need an integrated connected meaningful articulation of their health. Even if we move from data to information this, as I have said in this blog before, is not enough. The true power will not come from the provision and consumption of information but rather connections we can make with other people. As is the case with facebook and twitter it needs to become an integrated part of somebody’s life, to develop ubiquity.

Although efforts to date both here in the UK and across the Atlantic have been pretty consistent in their failure to take off, government agency expects that in less than 10 years people’s mobile device will contain a person’s health and lifestyle histories. The focus in this context is on public health, ostensibly the benefit of trading personal data for technologically enhanced protection from disease. David Cameron signalled his belief (or hope) in the private rather than state developed solution when the NHS project was shelved and hope placed in the Google and Microsoft projects.

Privacy is a complex issue but history has shown us that just as government expect a trade off between personal data and protection from infection, the real deal is made when the value we receive from sharing our personal information out-weighs either the real or perceived risk. If we take this a step further we can reference the stated ‘openness’ policy of patientsLikeMe that believes if we can change an entire culture of secrecy and paranoia we transform healthcare. Translational medicine on fast forward.

So what will the future of EMR and PHR be? In my opinion it will have to meet key criteria. I also believe that these criteria are a good starting point for any healthcare platform, especially if pharmaceutical companies are investigating new platforms for patient support.

1. Connected

Monolithic data storage systems have no future. Google health took no account of the complex eco-system that exists around patients, or people for that matter. In order to have a holistic perspective on a patient’s health, connection between the doctor, hospital, payor and pharmacist is essential. Information symmetry means that discussion between all parties is based on shared knowledge, one of the fundamental tenets of participatory medicine. Just as important to the symmetric access to information amongst medical professionals is that sharing also includes friends and family developing a circle of care around the patient. Patient-to-patient relationships are also crucial as they support learning, and drive motivation and engagement. Any healthcare platform today that ignores the necessity for sharing and dialog is missing out on the most important aspect of the internet. Furthermore we have to think carefully about mobility, the platform needs to be seamlessly integrated into all devices used by the patient, people share and collaborate when the technology is invisible and it melts into everyday life.

“…we have to think carefully about mobility, the platform needs to be seamlessly integrated into all devices used by the patient.”

2. Action oriented

As I have said before on this blog, to me the internet is an ‘action based economy’. People are emotionally driven, this is heightened during periods of stress such as managing health issues. Unless the healthcare platform offers truly compelling solutions it will simply not be used. In truth bringing meaning to the information stored can practically be envisaged when it supports complex decision making, for all stakeholders. This can help both the patient and the doctor articulate goals with greater meaning than pure science. On a very basic level a life based goal such as fitting into a special dress for really important event will mean more than a percentage reduction in BMI. If we are talking about Multiple Myeloma still being around for your daughter’s wedding means more than any measurement of M-protein.

3. Personalised

To me this goes beyond tailored content and customisation. The power of social media comes when people have access to each other not because of the information, but because our experience is both a support and also a block to good decisions in healthcare. Often patients do not even get the option of the correct treatment option Personalisation through connectivity could provide the patient access to all possible options, not just those the doctor has experience with. This information would make sense based on the complete patient health background stored in the system. This overcomes limited perspectives and brings centres of excellence to all, answering the problem that quantity often equals quality in healthcare.

“One of the biggest challenges in healthcare is the inability to determine value.”

4. Become a Life Guide

Healthcare decisions are complex, we have historically presented different information to defined groups based on specific areas of interest. Limited simplified information to patients with a different value system attached than to the information made available to those making economic health decisions. One of the biggest challenges in healthcare is the inability to determine value. There is limited definition of quality, let alone how quality ties to cost to determine value. It is very hard to have choice when it isn’t clear how to choose the right doctor, hospital or course of treatment. I believe we are all able to make complex value decisions when connected to benefit plans that allow us to balance the cost and quality of care in healthcare decision making. This is more than just a balance between cost and quality in treatment. Instead it is using data and information to help people make decisions about how they stay well by reinforcing good decision making by linking them to long-term quality of life and cost implications.

So to come back to questions posed at the beginning of the post, are ‘big’ data the true revolution in healthcare offered by a socialised internet? Yes, as long as we can distil meaning form the data and the information so it makes sense for people. Will concerns over privacy restrict development of truly helpful patient support, EMR platforms? No, we are entering an age where even the most conservative government institutions expect this kind of data storage and usage to be common-place. The benefit for the user has to be greater than the risk, much more than a storage solution. Instead we need a connected, emotionally driven personalised guide to being well as opposed to a list of results and measurements that outline the extent of the illness.

**The views within this article are those of the author and do not necessarily represent those of Janssen**

The next part in this series will be published on 12th August

About the author:

Alex Butler is a global thought leader in health care social media for the pharmaceutical industry with the implementation of a number of innovative projects, including the UK’s first pharma twitter account and the world’s first facebook disease community with open comments and post moderation. He is a regular speaker and writer for the pharmaceutical, marketing, communications and technology press. According to John Mack, Alex is the most followed pharmaceutical company employee on twitter in the world and was the inaugural recipient of the Pharmaguy Global Social Media Pioneer award in 2010.

Alex currently works for Janssen as EMEA Marketing Communications Manager, part of the Johnson &amp, Johnson Strategic Marketing team.

Passionate about new marketing and advertising models Alex is an invited member of the Wharton University Future Of Advertising Global Advisory Board, based in Philadelphia.

Connect with Alex on twitter and also on Linkedin.

Are ‘big’ data the true revolution in healthcare offered by a socialised internet?