The Careum Congress 2014/2nd ENOPE Conference took place in Basel, Switzerland, on 17th and 18th March 2014. More than 300 participants from 22 countries attended the conference. There were over 70 contributions in the plenary and parallel sessions and 35 posters, which all revolved around one key question.
«How can we make healthcare more democratic and how can patients and significant others get more involved?»
Here are some of our impressions, findings and highlights. We are particularly interested in finding out: What impressed you? What gave you food for thought? What was new for you? What will you take from this experience and use in your professional and private life? What would you like to learn more about in the future?
Having a say in and influencing health policy decisions is within reach or already a reality, at least partially. And this is exactly what national and international patient organizations expect, as shown by the demands of the European Patients’ Forum (EPF) and the International Alliance of Patients’ Organizations (IAPO).
Health policy decision makers and spokespeople outlined that this can be achieved by including this approach in political (partial) strategies (Denmark, Switzerland), firmly establishing it in the form of a patient’s charter or by law (Germany, Austria), and by representing it in national/communal committees (Federal Joint Committee, Germany; patient involvement boards, Denmark). The inputs provided during the conference’s plenary sessions show that health policy has broadened its horizons to implement strategies that primarily focus on the health of citizens and consumers. This strategy is currently known in Denmark as: «Less patient, more citizen» ==> learn more by listening to the podcast.
Is power actually being transferred to the patient? Still rather hesitantly, was the outcome of the surveys answered by congress participants. The «system would have to be turned upside down» for this to happen, claims Sigrid Pilz, patient and healthcare advocate from Vienna. Conversely, Pascal Strupler, director of the Swiss Federal Office of Public Health (BAG), emphasized that groups which up to now have had more of a political say (medical profession, pharmaceutical industry) would have to surrender some of their own power. But who, where and how much? These are questions that still need to be answered.
At the same time, speakers sounded a note of caution. Citizens and patients have to first know about their rights and demand them before they can use them, thus, health systems need to be more transparent. At the moment, a wide range of factors are barriers to participation: social inequality, low health literacy in socially disadvantaged groups, rising costs and time pressure in health care or lack of health professionals. For the future, it therefore makes sense to work more on empowering health professionals to empower patients. The areas in which these professionals lack competence in particular are hampering patient participation. Communication is an example of this ==> learn more by listening to the podcast.
«Why are we talking about patient empowerment? Shouldn’t we be talking about, how can we empower the clinicians to help us? How can we empower commerce and people to help us?» (Lord Nigel Crisp)
This assessment was reflected in the congress participants’ votes. They felt that providing the right training to health professionals was the most important factor in driving forward the empowerment of patients and significant others.
What does empowerment actually mean? Empowerment is a concept that is rather vague and hard to define. It was therefore challenged by conference participants and British health expert Glenn Laverack also referred to it as «fuzzy». But that does not mean it is not a valuable idea, for it symbolizes «power to the people», as phrased by Jürgen Matzat, patient representative of the Federal Joint Committee in Germany.
Both, empowerment and co-production represent an entirely different understanding of the role that patients and relatives have played in healthcare until now. Instead of passive service recipients, patients and significant others are seen as partners that have an active part in making decisions and implementing changes, thus helping to improve health and successfully (self-)manage chronic conditions ===> learn more by listening to the podcast and reading the blogpost on the keynote of Sir Harry Burns.
«Empowerment is not a strategy for everyone and not everyone wants to be empowered. But everyone should be given the opportunity to empower themselves!» (Glenn Laverack)
How can you empower people to be more independent and to take more responsibility? It was repeatedly stressed that empowerment can have the most impact when social inequality and vulnerable groups are addressed. This assessment was supported by the congress participants.
Several congress contributions therefore focussed on health literacy, which can be particularly low among socially and economically disadvantaged groups and people with chronic conditions. According to Australian expert Richard Osborne, there is no lack of tools to promote health literacy. Instead, he says it is much more important to concentrate on needs assessment, to take into account the cultural context, and to consider and try to influence social and organizational conditions.
Innovative technologies are shaping the way we deal with health and illness. They provide new platforms for patients and significant others to find and exchange information and encourage them to actively get involved in care and decision-making processes.
The congress presented various fields of application, including e-learning approaches for health literacy training, the use of social media by patient representatives, applied games for patient education and self-management support, interactive portals for specific target groups and how to deal with big data in health care. Jan Geissler, patient advocate and director of the European Patients’ Academy on Therapeutic Innovation (EUPATI), believes that the benefit of social media lies in its ability to «actually put the patient at the centre and enable all players to network and cooperate efficiently».
The advantages of technological innovations and new media are well-known and were also discussed at the conference. They provide a patient-centred platform, information around the clock, access to experience-based knowledge, opportunities to network, exchange ideas and learn from others, they can be used efficiently and as a form of support, and the list goes on. Around a third of the congress participants believe that future European health systems will be strongly characterized by information technology.
However, despite the somewhat magical fascination about what is technically feasible, we must not forget that «at the end of the day, technology is only a tool», says Kate Lorig from the Stanford Patient Education Research Center. She goes on to say that the solution lies with the patients. Jan Geissler points out that patient organizations, which function as silos, now need to start working together to finally speak with one voice. They also need to think about a new partnership model, which is ultimately what Health 3.0 is all about ==> learn more by listening to the podcast.
Although it has been accepted for a long time that chronic conditions are ranked among the biggest challenges in healthcare, the figures presented by Wolfgang Bücherl from the European Commission made a lasting impression nonetheless: in the European Union (EU), 86% of all deaths are due to chronic diseases, which ring up a healthcare bill of up to 700 billion euro every year.
Other problems faced by patients were brought to light during contributions by patient organizations that deal with rare diseases and are based in Germany, Austria and Switzerland. An estimated 6–8% of citizens in the EU suffer from rare diseases, which amounts to around 30 million people, including 4 million in Germany, 400,000 in Austria and about 500,000 in Switzerland. Those affected usually have to deal with long diagnostic procedures, a lack of care structures and feelings of isolation and loneliness.
In addition to national plans of action and health policy strategies (to be developed), new media and information technology undoubtedly play an important role in improving care for sufferers of chronic and rare diseases.
The congress also shed light on citizens’ rights to electronic health information and patient records as well as the necessity of rethinking and improving the access to health and patient information. Several parallel sessions and poster presentations analysed concrete approaches to improving care for people with chronic and rare diseases. These included online tools for decision making, self-management support in rehabilitation, care arrangements at home, standardized group programs or community approaches for influencing social determinants of health.
The general consensus seems to be that healthcare can only be improved if patients and significant others play a critical role in developing and implementing services, which should be designed bottom-up rather than top-down.
- Health policy strategies and healthcare services should be developed bottom-up rather than top-down, involving patients and citizens. In addition, the patient-centred approach should be expanded to include group- and population-specific perspectives.
- Health professionals need to be empowered to better support patients and significant others, particularly those with a lack of education or a socially disadvantaged background.
- Rather than representing a ready-to-go solution or a panacea for improvement, new technologies are first and foremost a tool and a resource.
- Far from being the problem, patients are the most important part of the solution, which is why they must be supported to actively participate – from individual interactions in day-to-day healthcare practice to health policy decision-making processes.
- Patient organizations are urged to stop working as silos, to leave their camps and to start cooperating to speak with one voice.
- Patients and their significant others are not merely do not merely have or use their rights, but they also contribute to a better healthcare system and improve how illness is managed, especially when associated in organized groups. In other words, the notion that patients and significant others co-produce health has to finally become a reality.
- Citizens and patients have to first know their rights before being able to use them – that’s why transparency in healthcare is the fundamental basis for patient participation.
And your opinion?
Which parts of the congress were you impressed by?
What will you take from this experience and use in your professional and private life?
What would you like to learn more about in the future? What could be improved?
This is a revised and updated version of the German blogpost on the conference. For the reporting at the event, the author is grateful for the contributions of Sylvie Zanoni and Prof. Dr. Ilona Kickbusch. The reporting of the Careum Congress 2014 was supported by Margot Klein (until October 2014 project coordinator at the Careum Foundation, Zurich, Switzerland) and Jim Phillips (director of the UK Quality Institute for Self-Management Education and Training, QISMET).