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Internet emancipates patients

Do you know what e-health or Health 2.0 is? Lucien Engelen is Health 2.0 Ambassador at Radboud University Nijmegen Medical Centre. He explains why this development in healthcare is important for patients. Because they will encounter the products of this development in the near future, if they have not already. Engelen: “Health 2.0 will create a level playing field in the relationship between patients and healthcare professionals.”


“Internet technology gives patients the opportunity to make better health decisions”, says Engelen. “They can research how to prevent illness and which doctors and treatments best suits their needs. Internet offers knowledge and knowledge is power. It emancipates patients. They can speak with their doctors about their illness and cure at a more equal level. And it offers more. Web 1.0 is the term used for websites that are mostly nothing more than a digital flyer. There are a lot of those still around in healthcare. Web 2.0 means interaction, sharing information, knowledge and experiences. Examples are forums where patients meet to talk about their illness, experiences with hospitals and doctors and give each other advice. But patients also talk and exchange information on social media platforms like Twitter, Hyves and Facebook. Health 2.0 is Web 2.0 in healthcare. Health 2.0 is not only about online contacts between patients. It is certainly also about interaction between patients and healthcare professionals.”


Doctor Google

“More and more people first turn to the Internet in search for information about their illness”, says Engelen. “In 2003 only one in ten people according to Dutch researcher TNS Nipo, in 2008 already seven in ten. The amount of information available online is enormous. The sources of the information are quite diverse. You can land on a page of a website belonging to a patient association, to an ‘independent’ health organisation, to a hospital or land on a patient’s blog and so on. In 2010 the Dutch Patients and Consumers Federation (NPCF) stated that 24 percent of people already use websites like to compare and choose doctors and hospitals. Three in five patients exchange information online about illness and health. One in seven patients publishes a blog about their own illness and medication. By doing so, they help others to go to their doctor better prepared”


Patients emancipate

Many health care professionals do not like their patients to turn to Doctor Google. They like even less that patients advise other patients. Is a patient with vague complaints able to find the right path in the online information jungle? And how reliable is the information found? What if someone did not choose the right diagnose or treatment? Furthermore, many websites belonging to healthcare institutions and patients associations still have a long way to go before they can provide that kind of information. The opinion of most healthcare professionals is that the patient should not be in charge. Ostrich politics according to Engelen: “In many public domains Internet and social media are causing citizens to emancipate, demanding open, correct and reliable information. WikiLeaks is a good example. Healthcare professionals and organisations better prepare for this change and embrace it. Offering digital flyers is not enough anymore. Furthermore, what these digital flyers offer often is a far cry from the real information needs of patients.”


Participatory healthcare

The Radboud University Nijmegen Medical Centre is the first Dutch hospital to notice at an early point in time that internet was changing the relationship between patients and healthcare professionals. “When I have to give a talk about Health 2.0, I often first give my audience a little startle”, Engelen says laughingly. “I tell them Radboud stopped centring on the patient. You can see the audience looking at each other in bewilderment. Because they have only recently learned they have to work patient centred. I then explain that this model still presupposes that the caregiver knows best what the patient needs. Then I tell them that we take this a step further at our hospital. We ask the patient to be a member in the team that treats him. The patient is the ‘owner’ of his disease and health and as such he has a role in making treatment choices. That is what participatory medicine is about. The doctor is not an all-knowing expert anymore; he is a competent advisor and coach.”


Digital clinics en healthcare communities

The new patient wants to bee regarded as an individual; and not as a diabetes or lung cancer patient. Hi want dialogue: “talk to me, also online!” By telling his own story online, he comes into contact with others that can help him and his doctor. For instance, he could get the name of a specialist who will have a look at his file and give an advice. Or another patient can give advice about complementary treatments that support his therapy. In this way a healthcare network is created that can change per patient en per treatment stage. The patient also needs to be able to have a look at his own medical files. Engelen: “We offer our patients ten digital clinics. In 2011 we will start some more. These are websites where patients can check their own medical records, including test results, and find relevant information about their illness. Soon patients will be able to make and check their appointments online too. The websites also enable online contact with their doctor and with other patients. Of course we are planning to add other services. For instance Skype consults. Furthermore, we have an online hangout for young adults with cancer. On this website called AYA4 they can meet and exchange experiences: from illness and treatment to finding insurance and mortgages. is an example of a healthcare community where healthcare professionals, patients and their caregivers at home can find each other. It currently services IVF patients and people with Parkinson’s disease.


Prevention has the future

“To keep the rising costs of healthcare in check, we also have to start using the internet for the prevention of illness”, says Engelen. “In Holland we already have online courses to treat depression in an early stage or to prevent people from developing a depression. But it has to go further than that. We will have to improve research on how to help people to make better health choices and stay healthy longer. An interesting book about that is ‘The Decision Tree’ by Thomas Goetz. Our government already says they want to go into that direction. Read for instance the report by a government advisory board on healthcare (RVZ) ‘From illness and care to health and behaviour’ (Dutch) and their Perspective of health 20/20 (English). Yet we spend not even one percent of our national healthcare budget on prevention. That will have to change. We have to move to Prevention 2.0 very soon!”


E-health explained

E-health does not only encompass the use of internet and communication technologies in healthcare in order to make processes between care givers and care receivers easier, faster and cheaper. It is also a way of thinking about healthcare that puts emphasis on convenience, service and promotion of health. It can support patient in self-managing their (chronic) illness. E-health models:

  • Telemedicine is remote care. The patient is at home and communicates health data to his healthcare provider over the internet. For instance send him blood coagulation values or daily diabetes test results. The healthcare professional can monitor these from his computer and act when necessary. But telemedicine is also used between doctors. For instance with teledermatology: a GP sends a picture of the patient’s skin condition to a dermatologist and receives a diagnosis and treatment plan, completely online. 
  • Tele-health is mostly about health education of patients and training of healthcare providers. Examples are online courses supporting the treatment of depression and supporting weight loss programs. 
  • M-health is the word used for the recent development in mobile internet that uses mobile software or apps on smart phones for monitoring, coaching or promotion of health. An example is an app that coaches autistic children to manage their daily schedule. Or an app that warns the patient at a preset time to take his medicine. 
  • Electronic Patient Dossier (EPD) versus Personal Health Record (PHR): the Dutch EPD is foremost a central online data exchange centre of medical files stored on decentralised computer systems of individual healthcare providers and organisations. At the moment it is only accessible for healthcare providers. The government want to give patients future access, but it is still unclear what this will encompass. A PHR has the patient as a starting point. The patient collects and manages his own medical files en determines who he gives access to the data. 


This article was first published in Dutch on the author’s blog on February 23, 2011, as well as in the March 2011 issue of NL-Visie, the magazine of the Dutch Liver Patients Association.


© 2011 Harriët Messing





Lucien Engelen

1 reply

  1. Great article! I especially appreciate the infomration you provide on Dutch comsumers use of the internet and social media sites. I’m a researcher for CSC’s Global Institute for Emerging Healthcare Practices. We are working on a paper about social media use for healthcare purposes. I am familiar with your data on hospitals use of social media (very helpful!) but am having trouble locating information on consumers and providers use of social media. Any reccomendations on where to look? I’m sure you’re busy but any feedback would be deeply appreciated.

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