Dr J. Gene: Patients should be involved in the development of clinical practice guidelines

2 09 2013

Joan Gene Badia

Médico de Familia

CAPSE-ICS- University of Barcelona



Clinical practice guidelines are the basic instrument to transfer the cooking generated by biomedical research to clinical practice. Are complex processing. They become scientific evidence specific recommendations whereas in addition the needs and the availability of resources of each environment. So far they have been basically developed by professionals, but we are becoming more aware that we must incorporate the patients in this process. This is a common practice in prestigious international agencies as the NICE (1) (National Institute of clinical excellence) British, and it should also be a common routine in our country. Unfortunately we too anchored in medical paternalism and are more backward than our European neighbours in health literacy of the population (2). But it is encouraging that more and more patients begin to say: “Nothing for me without me”. Encouraged that they wish to participate in all aspects that affect them, especially in the development of clinical practice guidelines since these instruments mark the type of care you will receive.

To advance this line, Health Guide, the Organization in charge of the Ministry of health clinical practice guidelines, Social services and equality has just published the methodological manual to incorporate patients developing clinical practice guidelines. The document (3) It shows that they can and should be involved in all phases of development of the Guide, Since the review of the scientific evidence to the making of recommendations. Its role is crucial since it contributes both the patient's perspective to address the aspects that interest them and care, to generate recommendations based on their values and preferences.

It is important that this document will serve to modify the process of elaboration of guidelines and clinical recommendations in our country. Only thus we will continue advancing in more adequate attention to the real needs of patients.



1)     NICE (National Institute of clinical excellencewww.nice.org.uk

2)     forumclinicWorryingly, the level of literacy in Spanish population health
blogs/blogdeleditor/espreocupanteelniveldealfabetizacinensaluddelapoblacinespaola www.forumclinic.org/

3)     Working group involvement of patients in the developing deGPC. Involvement of patients in the development of guidelines in clinical practice. Methodological manual. Clinical practice in the NHS guidelines. Ministerio de Sanidad, Servicios Sociales e Igualdad . Ministry of health, Social services and equality
www.guiasalud.es/ emanuales/pacientes/documentos/manual_pacientes.pdf

The success of TuDiabetes.org and Estudiabetes.org in the U.S.

21 03 2011

At the end of the year 2002, Manny Hernandez, engineer of Venezuelan origin and resident in United States, He was diagnosed with diabetes type 1. Such diagnostic led a strong change in the life of Manuel, alteration of routines, drugs… In the year 2005 He started using an insulin pump. To learn more about the handling of the device joined a group of patients of Orlando who used them. This meeting was a very rewarding experience in which learned much from the hand of other patients experts on the use of the pump.

That meeting of patients was that inspired him to create a group on the social networking sites. In 2007 decided to take the step: the network is based on the platform Ning, that allows users to create their own social networks without the need to invest in infrastructure (i.e. servers).

TuDiabetes born with the objective of “be a space on the web where the members we help one another, We educate us and share the steps that you must take every day to stay healthy living with this serious illness”. Currently the network has grown enormously, to have more than 6.000 users in the Spanish version (EsTuDiabetes.org) and 12.000 in the English.

The social network members can participate in forums or create their own blogs. In addition, they have the ability to share videos, photos and invitations to events, among others. The network is self-managed by a multitude of volunteers who are responsible for moderating forums, to welcome new users develop applications and even integrate the platform with other channels (Facebook, Twitter).

One of the most interesting features of TuDiabetes is the promotion of creativity. For example, its members have developed awareness through artistic competitions using materials for diabetes control. These initiatives are part of the Diabetes Hands Foundation, created from the social network to raise awareness among the general population. An example is the campaign Word In Your Hand in which patients were photos of the Palm of your hand, You should write a word that exprera feelings living with diabetes.

From a technological point of view, the main novelty of this social network is its integration with other platforms, largely due to the availability of open libraries that allow you to create applications. Thanks to this platform is out of sync with YouTube, Facebook, Flickr and may in the future be integrated with stories of personal health (PHR, In English), such as Google Health e Indivo Health.

diariomedico.com [en línea] Madrid (Spain): didiariomedico.comspan class ="tr_" id="tr_0" data-token="wqAgTGEgbnVldmEgc2FuaWRhZCB5IGxvcyBudWV2b3MgcGFjaWVudGVzIGVuIGxhIFdlYg,," data-source="">  La nueva sanidad y los nuevos pacientes en la Web 2.0. [REF. 21 March of 2011] Available on internet (PDF document): The new health and new patients on the Web 2.0.

Sra ESCALA: Doctor seeks partner 2.0 in the health system

4 10 2010

Elena scale Sáenz

Diariomedico.com Chief Editor

Although emerged in the Decade of the 70, We have had to wait until the 21st century for popularized the concept of empowerment or empowerment.

In the health field discusses mainly the empowered patient; that is to say, the patient with capacity and resources to adequately manage their health, make decisions and participate in health institutions. But, is there the empowered doctor?

Traditionally the responsibility on health issues has gone in health professionals and institutions. It was assumed that the citizen had no interest or was not trained for the handling of health issues. Simply receiving a diagnosis and treatment without replicating, and at no time raised the possibility that might opine, criticize or participate in decision-making.

There is little of this paternalistic model, because the process of empowerment of the patient is taking us to a new consultative and participatory model in which the citizen has more access to medical information, more autonomy and, above all, more preparation to interpret medical information.

The empowered patient is providing the necessary tools for the management of their health leaning, mainly, in information and communication technologies (ICT) and on social networks. Thousands of people organized on the internet exchanging therapeutic and personal experiences, and seeking an ally in healthcare professional to validate the acquired knowledge and better manage their health.

Some institutions have well understood this process and, Although not at all convinced, in an exercise of tolerance have put at the service of patient participation tools, valuation and management that give more transparency to the process of health, becoming a partner of the health system to the patient.

However, the Spanish doctor it is costing much more work empower themselves and become a partner of the health system. As the patient gains autonomy, the doctor feels increasingly more limited in their ability to choose profession or specialty, in their access to technology, in prescribing and to decide or control the time dedicated to their patients.

The empowerment of the medical profession within the health system seems much more complex, costly and, According to some, dangerous, so initiatives that give power and autonomy to the doctor shortage.

Low expectations of finding a partner in the health care system has forced many doctors to innovate with individual and private initiatives to improve their professional practice and even for relief assistance in your inquiry.

The doctor is looking for formulas that give more control in the Organization and execution of your job; It is establishing a personal dialogue with the patient through the prescription of links and the follow-ups by e-mail, Twitter or Facebook; He is teaching and spreading through blogs and even his voice joins other colleagues in innovative projects.

Doctors, like patients, they are organizing around ICTs to influence the policies of public health, to improve their clinical practice, the Organization and management of the exhibiting that work, thus creating a new way of working.

And all of this is the personal effort.

The Spanish health system does not seem prepared to accommodate this new professional, just it gives it management tools and what some are innovative initiatives, for others are nothing more than ' outputs of tone’ in an extremely hierarchical and burocratizado system.

But blowing new winds and all, even health institutions, We are called to innovate in health. You will get the Spanish professional find a partner 2.0 in the health system?

Dr MONGUET: ICT in the health sector: e-health, a sea of opportunities

6 09 2010


Josep M. Monguet Fierro

Dr. industrial engineer and Professor at the UPC.

The demand for health services is an important route. The sector will grow in the long term, What will increase expenditure in health more, in proportion, What do disposable income. The most relevant fact, It is the continued growth of the demand occurs in a context of provision of services where there is a very high rate of inefficiencies. Like this, the endemic weaknesses of management in health services alongside scientific excellence in the various medical fields. However, the demand for health services must be seen as an asset and as one opportunity rather than as a problem. The health system is the basis on which it is possible to design, test and develop new products (services, strategies and business models) in the field of health. E-health can be viewed through three consecutive waves based on leveraging ICT for:

a) Eliminate distances and manage time. In many cases the treatment distance saves transfers of patients and optimizes the management of hospitals. ICT approach also hospitals and specialists including. In addition, the e-diagnostico, an emerging field, It allows to optimize the work of experts on the basis of a demand for specialized services to worldwide.

b) Create increased services. The patient is actively involved in their health and maximizes your personal effort for the improvement or the containment of behaviors of risk and chronic diseases. Increased services enable, because, enhance the care and support to the patient, taking advantage of its own information and the support of your environment. A physician-centric model is gradually passed to a model focused on the paciente-usuario. Increased services generate many data users which allow to increase the scientific knowledge to improve diagnosis and treatment.

(c)) Maximize lifelong learning at all levels. In the decision-making protocols that have been decided by the authorities play an important role (top down), but most importantly the component of decision that widely extends throughout the system. In health services is essential to leadership distributed throughout the system that enables optimal decision-making of local character. This leadership is the result of a strategy based on lifelong learning at all levels of the system.

Thus, the three waves overlap to define a sea of opportunities for innovation (image).