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Sustainable Healthcare

Basel, 17-18 January, 2013

With the 9th joint workshop, the Patients Network for Medical Research and Health (EGAN) and
Roche continue their constructive cooperation and once more provide a prime example on how
patient advocacy groups and industry can efficiently cooperate to promote health.

The 2013 Workshop focused on two aspects of Sustainable Healthcare:

  • The Economic Crisis and External Constraints of Healthcare Systems: On day one,participants discussed how patients' needs and experiences can be better included whensociety decides, through Health Technology Assessment (HTA), how it values healthcareinterventions such as medicines.
  • A Rethinking of Development Models: On day two, participants discussed the advisory role of patients in the clinical research process, as well as the risks and opportunities with socialmedia in the context of care and research.The workshop discussions are summarised below to inform stakeholders and decision makers active in the area of promoting health.

Sustainable Healthcare I: The Economic Crisis and External Constraints of Healthcare

  1. Patient involvement needs to start at an early stage of the HTA procedure, which is amultidisciplinary process to show the value of healthcare interventions such as medicines.
  2. Patient input should be collected at sufficiently high levels of decision-making in HTAagencies. Appropriate time and resources should be set aside by HTA agencies to includepatients.
  3. Patients can ensure that patient-relevant aspects and societal aspects of healthcare interventions are appropriately regarded in HTA.
  4. Patient representatives to HTA processes need adequate training to participate in a way that ismeaningful. Such training must include both knowledge about HTA tools and processes andcommunication tools. Patient representatives should ensure that HTA knowledge/experience gained is spread within their organisations for sustainability reasons.
  5. Patient representatives need to gather and present data that are useful for the process. Datagathering must start early enough to be ready as soon as the HTA process starts.
  6. Training is needed on how and when to gather data of the quality that is necessary to informHTA processes.
  7. Both HTA experts and patients need to recognise and respect that they may use differentterminology, and make an effort to communicate information in a way that is clear and usefulfor the other side.
  8. All involved stakeholders must agree that patient-relevant outcomes are an accepted measurein HTA.

Sustainable Healthcare II: A Rethinking of Development Models

  1. The impact of the information society and the use of the internet have transformed the waycitizens inform themselves before taking important decisions. This development has a hugepotential to positively contribute to patient-centred healthcare decision making, provided it iscoupled with the right tools to ensure patient empowerment.
  2. With the great opportunities for interaction and for sharing information that are offered, for example, by social media and electronic health records, also come risks. Clarity on data ownership and adequate data protection are needed to ensure privacy and to avoid themisuse of personal information. In this context, non-discrimination legislation should beconsidered at the EU level. At the same time, users of social media need to be aware thatsuch media are difficult to control and thus, per se, involve a certain element of risk.
  3. The desire of patients to be more involved extends beyond the patient-doctor setting and theindividual treatment- and care decisions. Patients also want to be partners and advisors in theclinical trial process.
  4. Patients who participate in clinical trials (as subjects) would welcome clearer and morecomprehensive communication about the trial, before, during and after its active phase.
  5. Health literacy and education are key tools to ensure that patients and patient representatives are empowered to use the digital opportunities to their advantage, and to play a consultativerole in the clinical trial process.
  6. To enable patients to advise on clinical trials, stakeholder cooperation should be promotedvery early on in the research process. Such cooperation should bring together patients andthose who develop medicines to identify research targets that address true patient needs for their medical conditions.


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