Juncker’s e-health exclusion zone

Docs and patient groups claim they have been cut out of the European Commission’s new health project.

European health professionals, hospitals and patients on Monday reacted furiously to what they call a deliberate exclusion from European Commission plans for a new e-health program.

Six leading European umbrella organizations told European Health Commissioner Vytenis Andriukaitis they saw “a dangerous shift” in being kept out of a joint action — which means they are cut out of engagement in and funding from the project, due to kick off within days.

The Commissioner formally announced the plans last week at the e-health conference in Riga.

The goal of the Juncker Commission’s initiative is to strengthen coordination between member states in using electronic health records and prescribing, telemedicine and other forms of e-health.

In a letter to Andriukaitis,  doctors, dentists, pharmacists, nurses, patient and hospital groups blasted the fact that the plan “does not envisage the inclusive participation of stakeholders and does not foresee any mechanisms to resource their eventual contribution to the various tasks and activities set out.”

They are asking Andriukaitis to intervene — and privately they say EU talk of stakeholder involvement is contradicted by actions.

A spokesman for the Commissioner did not respond to a request for comment.

Health organizations have been routinely involved in similar actions funded by the health program, and professionals, hospitals and patients were associate partners on an e-health project that ended last year.

They depict their exclusion as a serious threat to future cooperation on health issues.

“Access to these strategic initiatives has been highly undermined,” according to their letter, “and if no action is taken to change this situation, we fear this could set an unfortunate precedent.”

The groups do not accuse the Commission directly — although they comment sharply on what looks like Commission passivity.

They lay the blame firmly at the door of national decision-makers.

“We felt it important to share with you that member states have clearly chosen not to engage with stakeholders to discuss cooperation and participation,” they write.

The letter details their grievances over how, during the past year while the plan was being prepared, they were repeatedly rebuffed, learning of developments only by chance, and late — too late to respond to an invitation to apply for associate partner status.

They express appreciation for “the openness showed by the Commission” in a series of contacts since late last year, but regret that “stakeholders have been relegated to an observer status with no capacity whatsoever to have a real impact on the work to be carried out.”

Andriukaitis should urge member states “to reconsider their approach to stakeholders’ involvement,”  their letter concludes, and to “ensure effective and transparent access to these funding mechanisms for European organizations representing stakeholder groups directly concerned.”

Signers of the letter expanded to POLITICO on the reasoning behind it.

Paul De Raeve, the secretary general of the European Nurses Federation, told POLITICO that excluding key players risks the project’s implementation.  He spoke out last week about the need for EU programs to engage more with on-the-ground expertise.

“Trust plays a key role in shaping patients’ and health professionals’ decisions on whether to adopt and use e-health,” he told the EU e-health meeting in Riga.

John Chave, the secretary general of the European pharmacists group, said that the exclusion was the latest evidence of their marginalization, and that in e-health in particular, this holds risks for health.

“There is an inherent danger in that technical discussions become divorced from the practice of healthcare, and that can weaken the outcomes and deliverables, with negative consequences for health,” he said.

Chave called the funding aspect of little significance, since it is only reimbursement of costs in travel and participation in meetings. But he sees political importance in keeping stakeholders involved.

Birgit Beger, secretary general of the standing committee of European doctors, called it “short-sighted” to discuss e-health policy and tools “without involving those who will be affected by the decisions in everyday life.” Forgoing the expertise that doctors can provide “is a costly mistake, for the health system, and for efficient, high quality and safe healthcare to the patient.”

The groups make clear in their letter that they are resentful not only at their exclusion, but also about those that were given a role in the program.

The letter says they were “surprised to discover that contrary to what we were told earlier, the European Health Telematic Association, itself a stakeholder organization, but not in the position to represent or bring in feedback on behalf of patients, health professionals, or hospitals, had been included in the joint action as a subcontractor and charged with the practical coordination of stakeholders’ input.”

The association includes health care and technology companies, hospitals, health authorities, and disease-specific organizations.

Its secretary general, Marc Lange, told POLITICO he sees the importance of remaining in touch with all groups for political reasons.

But he expressed surprise at the approach and tone of the letter over what he termed “a non-issue,”  and at the mention of funding — which is, he said, only a matter of tens of thousands of euros.

He clarified the nature of the subcontract with his association. “Our mission is not to coordinate, but only to facilitate communication between stakeholders and the member states,” he said.

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