Tessa Richards: The right to be supported to self manage disease

Tessa RichardsOn the eve of the EU elections, reports and manifestos aimed at attracting the attention of newly elected MEPs and commission officials have been flowing thick and fast. A new one shortly to be added to their list has the working title, “Empowered patients are a resource not a cost.” It will set out recommendations on how people living with long term chronic disease should be supported to self-manage not just the medical aspects of their conditions, but the social, psychological, caring, and financial burdens they impose too.

The draft manifesto on patient empowerment has been drawn up by the Active Citizenship Network—a European coalition of around 100 patient and civil society organisations. Earlier this week it convened a meeting in Brussels to air debate on NCDs and get input from participants of member organisations on its draft manifesto.

Monday 12 May was not European Patients’ Rights Day. That was the 18 April. But hey, anniversaries can be celebrated any day and health commissioner Tonio Borg started proceedings by welcoming the group “on the occasion of the 8th European Patients’ Rights Day,” a day which provided “a good reminder to policy makers, such as myself, that patients should remain at the heart of our decisions and policies.”

The Active Citizenship Network has form. It was the engine behind the establishment of the EU Patients’ Rights Day and  launched a European Charter of Patients Rights in 2004. Its focus is on citizens’ rights, responsibilities, and roles in healthcare.

The EU does not have a formal EU policy on patient empowerment, but it’s a key principle in the Directive 2011/24/EU on patients’ rights in cross border healthcare, and  “a cornerstone of its new reflection process on chronic disease,” said Katja Neubauer, deputy head of DG Sanco’s healthcare systems unit.

The commission has set up a consortium to inform this, whose monika—EMPATHiE—is derived from its purpose: to identify good practices on patient empowerment across Europe and define their benefits, transferability, barriers to uptake, and scope for collaboration. A compendium of 26 examples to date have been drawn up and is available from the network.

Rosa Sunol, director of the Donabedian Institute in Barcelona, provided figures to convince that investment in self management of NCDs makes sense. Over 80% of Europe’s citizens over 65 live with a chronic condition and 55%  have multiple conditions, she said. Care for them consumes around 80% (700bn Euro’s) of Europe’s healthcare budget.

The EMPATHiE group defined empowerment as “a process that enables people to gain control over the management of their conditions in daily life.” (With a rider about the extent to which they can and want to do it). It puts emphasis on acquiring the knowledge and skills to work in partnership with healthcare professionals and informal carers.

Global interest in patient empowerment “is reflected by the rapid rise in the number of systematic reviews on the topic,” Sunol said. The main strategies to promote it fall into three camps: raising health literacy, embedding shared decision making, and providing people with the skills and tools to monitor and manage their condition and adopt healthy lifestyles.

Many participants called for more action on promoting healthy lifestyles. Catherine Hartmann from the European Chronic Disease Alliance urged the EU institutions to take bold steps to reduce fat, sugar, alcohol, and salt consumption, and promote individual responsibility for health. But apocalyptic talk about the burden of rising rates of obesity and cancer was countered by Ingrid Kossler, a member of the European Economic and Social Committee.

There should be less “gloom mongering” about the epidemic of chronic disease, she said. Sweden had calculated that “if we could add five healthy life years onto the lives of people over 65 we won’t have a health systems sustainability problem,” and that should be the joint European quest.

Patients living with long term conditions benefit from strong personal support networks. The supportive potential is being explored by the EUGENIE group under the EU-WISE framework programme. Manuel Serrano, a member of the group said that voluntary and community groups could play a much larger role. Health professionals should be aware of how much they can improve people’s quality of life and work more closely with them.

Debate on the wording of the manifesto exposed the diversity of views that enliven all EU gatherings. Some advocated brevity and bullet points; others a nuanced discursive document. A compromise was reached. A long and short version are being circulated. Some, myself included, lobbied hard for shared decision making at all stages and ensuring patients have full access to their own medical records.

The manifesto, which will be online soon on the Networks website, will be presented to the commission to endorse and promote, prior to dissemination to the new MEPs on the block.

Its message is set to be reinforced by a new report by the All Party Parliamentary Groups on Global Health. This also flags up examples of good practice in promoting self management and calls for more emphasis on, and investment in, promoting patient empowerment. Patient Empowerment: for better quality, more sustainable health services globally.

Tessa Richards is senior editor/patient partnership, BMJ.