Roxana radulescu

Page updated on June 4th, 2009

Policy Officer, European Patients’ Forum

The EUPHORIC project, a further step towards building a united Europe in the health field?

The European Patients’ Forum believes that sharing experience and information among the member states (about good practice, available treatment, research results, etc) has enormous potential and produces major benefits. Furthermore, it contributes to improving the quality of health services in Europe.

For example, a pan-European network of expertise that allows the exchange of good practices in rare diseases can be very positive for EU patients and can save member states resources.

It deals with a strategy of positive cooperation that avoids duplicating initiatives, inspires and learns from the good example of others, but also learns from the mistakes made by others. Furthermore, at least potentially, it can make way for an improvement in health services and the quality of life of a person. Finally, if all of this is communicated correctly, it can increase the positive perception of the EU and bring it closer to its citizens.

The EUPHORIC project concerns outcome indicators, a highly complex and discussed topic. Even though everyone agrees on their usefulness in measuring the effectiveness of health systems, disagreement occurs when discussing the publication of the results to the public.

Our members’ conviction is that all patients have the fundamental and legitimate right to information regarding their own illnesses, possible treatment, how to deal with their disease, rehabilitation and support services. It’s a matter of solidarity, equity and rights.

The key point is that information about health, therapy options, research results must be communicated to patients and patient organizations in a non-specialized language, which is comprehensible and accessible.

Well-informed patients are an asset to themselves as well as an advantage to society. A higher level of awareness leads patients to take on greater responsibility in caring for their health. The benefits that this attitude produces on the patients themselves, transforms into a benefit for all health systems and economic budgets.

What’s certain is that the use of indicators and the publication of the results can expose risks. Health care operators might concentrate more on improving the results rather than improving the quality by refusing, for example, to carry out interventions on seriously ill patients in order to not reduce their index of performance.

Health care operators work in order to offer patients access to services and quality services. Both aspects are fundamental and patient organizations with adequate resources can help. They can be involved and work together with operators and communicate information to patients on the complexity of treatment and on its risks, on the continuation of assistance, social services and available support. This could help operators who often deal with a significant number of patients and with enormous pressure save time and energy. We also believe that an aspect which needs to be reinforced is the relationship between professionals and patients. It must be based on trust and on an open and honest dialogue. Moreover, more investment must be directed to the health literacy of patients (in cooperation with patient organizations) and to increasing the capacity of operators to communicate with patients.

There is another long debated aspect: what happens when the publication of evaluations unveils what are the worst and the best health institutions? Isn’t it inevitable that there will be a rush to the best centres by patients seeking the best treatment?

What patients want is quality in the services offered and preferably close to home, their family and their community. A sick person has no desire to travel. We believe that what needs to travel is knowledge and medical professionalism rather than the patients.

Is there a way to also involve patients in the evaluations from the beginning?

According to the European Patients’ Forum, member states can have a real health system that has as its centre the patient only with the patients’ involvement. As far as the EUPHORIC project is concerned, its impact could have been greater if the organizations that represent patients were involved in defining the indicators from the beginning of the process. For example, regarding cancer patients, what is important for us is not only the survival rate but also the quality of life.

One way of doing this is to involve patient organizations that are specialized in the areas covered by the indicators and to discuss how this can be done. However, in order for this to happen, it is important that resources are identified and transferred to organizations so that they can participate in the work.

With a wider outlook in mind, the European Patients’ Forum recommends that when a proposal for a project is prepared patient organizations are invited to take part in the consortium from the start so that they can contribute in forming the project and carry out a truly participating role.

Organizations can also be involved in research. They can identify issues to be researched that were previously unidentified by researchers or clinics. They can assure that the issue outlined is important to them and therefore to public health.

As well, patients can help in recruiting other patients for research projects, disseminate results and work to assure that changes are implemented.

Finally, informed and empowered patients are excellent decision making interlocutors when dealing with transferring some aspects of the research to clinical practices.

But are patients ready for all this?

Of course. In the last few years, there has been a change in the paradigm which has seen the patient transform from a passive receiver to an informed and empowered patient. The patient has become an expert in his illness and shares together with his doctor the decisions on the best treatment options.

As well, there are patient organizations that can play a key role as mediators between health professionals, decision makers, researchers and patients.

They represent the patients, their experience and knowledge and give voice to their interests.

Through courses, campaigns, printed information, they can support the participation of patients in the design and implementation of health policies and programmes. They can act as catalysts of change that place the patient at the centre of the system. Patient organizations are offering to take the responsibility of contributing through their knowledge and skills to improve the quality of health assistance. But the appropriate resources are needed to be able to work efficiently and professionally.