Empowering patients

Tine Juel

“What needs to happen is for doctors to come down off their pedestal and for patients to get up off their knees,” said Robert Johnstone of the International Alliance of Patient Organizations at the First European Conference on Patient Empowerment held in Copenhagen, Denmark on 11–12 April 2012. The Conference was attended by 260 participants from 35 countries and supported a key agenda item of the Danish Presidency of the Council of the European Union.

Chronic diseases account for an estimated 86% of deaths and 77% of the disease burden in the WHO European Region, as measured by disability-adjusted life-years. These diseases, including cardiovascular diseases, cancer, diabetes, obesity and chronic respiratory diseases, are now the largest cause of death and disability worldwide. This development is bringing about a fundamental shift in health systems and health care and thus in the roles of patients.

Technological advances such as greater access to information and knowledge (in part because of increasing use of social media and social changes), experience with self-management programmes and new legal requirements for patient involvement have also contributed to creating a new dynamic through which patients and citizens are redefining their roles in relation to health and social care.
 “Doctors have to change … the role of the general practitioner has never been more important, but the training is old-fashioned,” commented Svein Magnusson from Iceland during the Conference. Participants made clear that involving patients as qualified partners in co-producing health care is a positive development that health services need to embrace.

The key discussion is how health systems can be reorganized so that they enable dialogue, co-production and collaborative care. Empowering patients involves not only how a doctor relates to a patient, since health care comprises more than just doctors, and taking control of one’s own health involves more than just gaining a voice. The issue is how patients can be seen as expert in their own conditions and can be enabled to become an equal and active partner in managing their health care.

Empowered patients improve the use of resources

“Is there not a danger that patients will just demand more and more as they become empowered?” was one of the concerns raised in the debate. Several participants countered this worry and explained their experiences. Patients who are engaged in their treatment and in decision-making are far more responsive to treatment, and it is more effective. Moreover, when presented with various options, patients tend to choose those that are less invasive and thus not necessarily more expensive.

Supporting the belief that empowering patients is not resource-intensive and costly, Lars-Erik Holm, Director-General, Chief Medical Officer, Swedish National Board of Health and Welfare drew on experience from Sweden. “Seeing the individual as one person can be resource saving.” He explained that patients now see many different doctors. One of the greatest problems for older people is multiple conditions and the resulting uncoordinated prescription of multiple drugs.

Professor Paul Johnstone of WHO supported this, citing the early findings of a major study of 6000 patients. These initial findings showed that self-management technologies and support for patients reduced health care needs and costs, and most importantly led to a significant reduction in mortality. “There are two wins: a new way of offering care (with a shared agenda) and saving money. I am optimistic about the next 10 years: as more studies are published this will put the initiative in a strong position,” he concluded.

New technology is a tool but not the whole answer

New technology allows patients to get and share information easily and gives them access to knowledge traditionally held by doctors, but this change does not inherently empower patients, participants agreed. “Suppose I am a patient: I have 12 000 apps about chronic disease, access to my records and a battery of gadgets for home support. Am I more empowered? This all gets me partly off my knees, but it doesn’t get the doctors down from the pedestal,” commented Rafael Bengoa, Regional Minister for Health and Consumer Affairs for the Basque Country of Spain.

Technology can be used to build a healthy scepticism among the public and make them aware of the choices they have. There is pressure to consume more and more health care, much of which is not beneficial. Angela Coulter, Director of Global Initiatives of the Informed Medical Decisions Foundation added, “To counter the explosion of costs partly caused by the optimistic view of what health care can provide, we need to teach the public to ask whether an intervention is beneficial. When you inform patients and offer them options, they tend to choose the less invasive and less costly ones.”

The participants generally agreed that technology is a useful tool, but what really needs to be addressed is how to change the health system.

Moving patient empowerment forward

Martin Seychell, Deputy Director-General for Consumers and Health of the European Commission, underscored the immediate importance of addressing the issue at the political level: “One of the few good things to come out of the current crisis is that legislators are looking for solutions with fresh eyes. They are looking at what others are doing better.”

In her closing remarks, Ilona Kickbusch of the European Network on Patient Empowerment suggested four steps that organizations working with patient empowerment can take to bring this issue to the attention of these policy-makers:

  • bringing themselves into the political process and take advantage of the opportunities that are available – ensuring that this agenda is part of other political agendas that are underway;
  • shaping systems and technology, in the direction of collaboration and co-production between patients and the health system;
  • continuing to develop the notion of co-production, defining more clearly what is meant and how outcomes can be measured more clearly; and
  • using technological and other means to increase knowledge generation and exchange from patient to patient.