Brussels seemed to be the center of the world last 2 weeks - several conferences were organized, unfortunately overlapping as topic and time. For example, on the 17th of June, members of COCIR (European Radiological, Electromedical and Healthcare IT Industry) celebrated 50 years of existence of the association and organized a series of workshop around eHealth.

On the same day, I have been invited to attend a workshop organized by Linklaters - a law firm that has a practice related to eHealth. The title was very appealing ("Overcoming the challenges to eHealth), as well the quality of attendance so I opted for this particular workshop.

Why a law firm would organize such a workshop about eHealth? Linklaters received a mandate from Rockefeller Foundation to prepare, with the International Society for Telemedicine  & eHealth (ISFTeH), a feasibility study on the creation of a new international Convention governing the key aspects of eHealth. The report of Linklaters will be published later this year. The workshop was one of the main initiatives designed to get feedback for this study.

Under the brilliant moderation of Nigel Jones, the Global Co-Head of Healthcare Group from Linklaters, we assisted at a first group of presentations setting the scene of eHealth at international and European level.

I will detail some of the presentations I enjoyed the most.

Professor Yunkap Kwankam, executive Director of the ISFTeH made a quick overview of the main features of eHealth and expectation related to its implementation. He outlined the importance of eHealth for boosting the human resources performance, especially in countries with critical shortage of health professionals (doctors, nurses and midwives). A view of the countries with critical shortage is given by WHO:

He outlined that, even in the poorest countries, the accumulation of information and available knowledge makes impossible for the health professional to cope with the problems of their patients. There is no way that this quantity of data could be used without computers and internet.

Unfortunately, the knowledge gap has innocent victims: 11 million children under 5 years old die every year - 90% of them in the developing world. 2/3 of these death (7 million) can be prevented by available, effective and cheap interventions.

The challenges to eHealth identified by Yunkap in developing countries are related to the local capacity to implement eHealth. The low institutional capacity (Infrastructure and connectivity, legal and regulatory environment, administrative structures)  is accompanied by a limited human capacity (lack of ePractitioners - health workers able to use ICT in their activity, lack of tools to enable citizens to be transformed from a passive observer to active participant in his own care, lack of eHealth specialists in the Ministries of Health with career prospects to attract and retain them).

Moreover, there is eHealth '"pilotitis" in developing countries - a wealth of small scale pilots, often not adequate with the size of the problem tackled, with no repository of information and knowledge about the results of the initiative.

Yunkap identified the mobile health (mHealth) as being the future and the solution for many health problems in developing countries; the mobile technologies are a convergence of media, communications and computing that can be available where the real need is. The mobile technologies can facilitate exchange of information from trained volunteers and spread of basic medical knowledge in the most remote areas. 

Yunkap described the initiative of the ISFTeH in the area of sharing of best practices - an international eHealth registry with comparable information on eHealth projects around the globe, shared freely and linked to other repositories of information on ICT in Health. The three main conclusions of his speech are: the need for a continent-wide vision in eHealth, with local insights; the human resources are the key and partnerships  are the model (private-public, local, national and continental networks).

Next speaker, Ilias Iakovidis, Deputy Head of Unit from the eHealth Unit of the DG INFSO and Media (EC) made an overview of the EU activities in the area of eHealth.

He explained which are the main barriers to eHealth in his vision, such as, market fragmentation, lack of interoperability, the legal uncertainty, lack of availability and access to finance and lack of procurement in the area.  A special discussion was engaged around cultural barriers: in some countries, ICT is seen by the doctor as a tool to be controlled by the state or to loose the power on his patients. The collaboration among practitioners  and exchange of information raises concern about loosing patients. That's  why, empowering patients, informing them, giving access to medical records is seen as an intrusion in a private space. An interesting discussion was also triggered by the different perception of factors determining the health status of an individual or a population. While the environmental factors, the quality of the healthcare  and genetic "blueprint" seem to be very important, in reality the paramount factor is the healthy behavior and  lifestyle. Moreover, Ilias explained the EC focus is to explore the legal way of exploiting the data from Electronic Health Records, while protecting the fundamental right of data privacy, for secondary treatment - clinical studies, epidemiologic studies, intelligent alerts.

Next speaker, Tanguy Van Overstraeten, from Linklaters UK,  raised our attention on the legal constraints on the use of health data. eHealth application often involve the processing of information regarding identified or identifiable patients and trigger issues of data protection, confidentiality and security. The EU level legislation such as the Directive 95/46 has no effect without national transposition of the same principles throughout Europe.

There are a number of Directives related to use of personal data (such as 95/46, 2002/58) Council Recommendation and opinions of the Art 29. Committee related to eHealth (see N° 131 of 15th February 2007 on the processing of personal data relating to health in the EHR). The EU legislation has a twofold ambition: protect the data privacy while allowing the free movement of personal data within EU. Some of the texts such as the Art 29 opinion on use of EHR data, limit considerably the exploitation of medical data for secondary purposes especially for research and public health.  Briefly, the speaker explained the main definitions related to use of personal data in eHealth and concluded that in EU a legal framework is in place that must be taken seriously into account and data protection issues should be identified as early as possible as specific technological features may help compliance (e.g. privacy by design).

The users perspective was detailed by Professor Iain Carpenter, Clinical Lead on Record Standards at the Royal College of Physicians from UK. Iain led an outstanding work on a clinical guidelines regarding the presentation of an EHR. Curiously, after exploring the needs of many categories of specialists, it appeared that a common EHR could suit most of the specialties. As a conclusion, Iain presented us the main clinical elements of the medical record agreed by all associations of health professionals.  A number of stages of consensus was used to get the feedback of working clinicians. The first stage began in July 2006 with a poll we conducted through Doctors.net to gather opinion on standardizing the structure of the admission clerking proforma across the NHS.  The poll showed 2:1 in favor of having a standardized proforma with 73% of consultant physicians in agreement. A similar poll was conducted with the fellows and members of the RCP with 86% of consultant physicians agreeing. Both polls had over 1000 respondents. A formal launch and publications of the Record standards are planned for the Autumn. Templates of admission, handover and discharge records will also be available online as would a clinician's guide. More information can be found here.

The patients perspective was expressed by Ms Marlene Winfield, Director for Patients and Public, NHS, UK. Ms Winfield explained that one the most important barriers is the lack of availability of medical information for the patients. There is still a blockage of the patients' data by the physicians.

The ICT must be a collaboration tool and the computer must be part of the sharing exercise before, during and after a consultation. The main elements that the patients could share with their doctor or other health professional might be a questionnaire that the patient prepared for the consultation, a regular health tracker - a questionnaire/graph/video diary that the patient keeps about general health, symptoms, results of the patient self-monitoring, photos taken by the patient if his own wounds for example,  test results  (lab, scan or X ray.), treatment preferences, information on prescription, feedback on the service given by the patient or other persons. One of the initiatives of the NHS in order to reinforce the information for patients is a pilot on prescription (see www.informationprescription.info). 

Ms Winfield described a scenario involving a person with diabetes using internet, Personnel Health Records and monitoring devices for decreasing the risk of acute disease and complications.

The conclusions were that the patients want more information to enable them to look after their health (Picker Institute studies.), eHealth can facilitate communication between patients and health professionals, the EHRs must be jointly held, there is no sustainable alternative in the future to the partnership clinician/patient. This partnership is a big cultural change for clinicians and patients and must be part of the education in schools and professional training. The patients are unlikely to use their eHealth tools to the maximum unless they become a routine part of the care.

The next presentation made by Pieter Van Den Broecke from Linklaters Belgium was around the Intellectual Property Rights (IPR) in eHealth. he outlined the available resources for IPR protection and the specific legal issues that are to be considered. IPR is an opportunity for innovators in the area of mobile devices, personnel health and  monitoring devices. 

My presentation around eHealth barriers identified the usability, trust, sustainability and empowerment as the main difficulties in eHealth. Why usability? Several studies shown that due to the low usability many IT programs are abandoned:

Moreover,the software vendors have left all the technical complexity for the user.

The only way to get to the desired level of usability is to design a software that would reflect the work process of the user (workflow ) and the the mental model (concepts) of the user (terminology). Such a development would give birth to a new generation of Clinical information systems (partner level) that would enable assisted clinical decision, use of care path and real disease management (built on evidence based medicine and evidence based management).

This kind of innovative software is developed by some of the partners of Microsoft (such as Medicognos, C-Care, Fresenius, Parrot Systems) and is seen as a very promising solution for many IT plans regarding management of chronic diseases in view of a sustainable healthcare. The usability is also related to the user interface and I will remind the project funded by the UK NHS  - Common User Interface guidelines.  As a definition, the Microsoft Health Common User Interface (CUI) provides User Interface Design Guidance and Toolkit controls that address a wide range of patient safety concerns for healthcare organizations worldwide, enabling a new generation of safer, more usable and compelling health applications to be quickly and easily created.

Moreover innovative data entry, speech recognition, surface computing are some of the innovations the Microsoft and its partners are proposing to increase the speed of interaction of health professionals and patients in eHealth.

Some examples can be figured:

The second barrier -  trust - (detailed in my previous blog) has as solution involvement of the clinicians, the health professionals very early in the process of planning and implementation of a eHealth solution. We need to convince them by showing solid proof of improvement of outcome of healthcare in similar settings and train and assist them to enable the appropriation of an IT solution.

What about sustainability?  The paradigm of care versus cure is the one to which I adhere. The approach of an individual, a patient as whole, an entity with personality, living in certain environment (social, natural) and having certain genetic predispositions and habits is offering the key to sustainable healthcare. Using the IT tools we can inform, empower, facilitate the information of the patients and enhance communication between caregivers and the patients.

One of the key elements could be the Personnel Health Record supported by a platform such as HealthVault.

Such solutions could facilitate in Europe the empowerment of individuals and pave the way towards efficient disease management solutions and a real, incentive based containment of costs.

Dr Octavian Purcarea

Global Solution Manager

Worldwide Health

Microsoft