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PreVention oF chronic diseases A LOOK AT SECONDARY AND TERTIARY PREVENTION GREGORY NINOT 2014 1 supported by abbvie Prevention of chronic diseases A look at secondary and tertiary prevention Grégory Ninot is a professor at the University of Montpellier. He is the head of the EA4556 Epsylon research unit (www.lab-epsylon.fr) which is a part of the University of Montpellier 1 and 3. This laboratory studies the psychosocial mechanisms at work in the change and maintenance of health behaviours. He co-manages a multidisciplinary interventional research platform aimed at examining the best methods to demonstrate the effectiveness, benefits/risks and cost/effectiveness of preventive healthcare measures and support care, iCEPS (www.iceps.fr). He is the author of a blog on the subject (http://blogensante.fr). 2014 2 sommaire 04 Foreword 06 Introduction 08 Key points 09 Part I – A new type of protection related to lifestyles and life trajectories 18 Part II – Humanistic goals 26 Part III – Assisting with behavioural compliance 35 Conclusion 36 The scientific committee 37 For further details on the subject 38 Useful plans and reports for secondary and tertiary prevention 40 Abbreviations 42 The organisations in the field 44 The methodology used 45 The people consulted 3 foreWord ABBvie: eXperimenting, AdApting And vAlidAting meAsUres thAt improve heAlthcAre denis hello, vice president europe south, abbvie The increase in healthcare needs and costs in Europe, and particularly in France, is leading to major challenges for our societies and healthcare systems. Although living conditions are improving and people are living longer, new sustainable solutions are nevertheless necessary. This issue concerns everyone. The project came about through the desire to contribute openly to the debate on these challenges and to encourage the emergence of tangible practical recommendations to improve the secondary and tertiary prevention of chronic diseases. AbbVie pioneered a European initiative aimed at contributing to the development of the secondary and tertiary prevention of chronic diseases. Why such a project? Chronic diseases will have a major impact in future years, since it is estimated that currently one hundred million people in Europe have a chronic disease, and this figure is rising, notably due to the increase in life expectancy. In light of this immense challenge without any innovative solutions, the longevity of healthcare systems and the quality of care cannot be ensured. For the pharmaceutical industry, maintaining conditions to take proper care of populations is a priority and this is why we decided to adopt a new approach. What aspect of chronic disease management in France are you interested in? Is this measure a part of a more longterm vision for the development of our healthcare system? To be effective, we must intervene in all areas that contribute to the functioning of the healthcare system and not only the economic aspect. Therefore, we are looking for new solutions, for example, improving the healthcare process as well as the organisation and quality of care. The fact that diseases are becoming chronic is an issue for all countries. 4 How can the secondary and tertiary prevention of chronic diseases be an efficiency lever for the healthcare system in France? To preserve our future means that we must take a certain number of actions such as the de-compartmentalization of patient management which is still too siloed, resulting in a discontinuity of care; giving more consideration to the development of patient behaviours regarding chronic diseases; and finally, better coordination of actions at all levels and among all the stakeholders. To succeed, we must adopt a positive dynamism to carry out these changes and in particular, have a collaborative approach whereby the patient is the focus of interest. All the stakeholders have a duty to coordinate their efforts by surpassing sectional stances, and sometimes also biases towards private stakeholders which include the pharmaceutical industry. However, our knowledge of pathologies and medicines and our capacity to participate in the healthcare process enable us to organise pragmatic pilot programmes to evaluate measures that are apt for implementation. We are convinced that the pharmaceutical industry should contribute to the development of our healthcare system beyond medicines. What is the role of private partners today in secondary and tertiary programmes developed in France? Do you think this role is sufficiently developed? Over the past few years we have developed new initiatives to provide significant improvements: the creation of a patient monitoring system between visits to specialists in order to provide additional data useful for proper patient management. This is called « theAbbVie Care», or organisational assistance to improve appointment scheduling in hospital services. Our knowledge authorises us to contribute to improving collective benefits. In the future, to go even a step further, we should be able to predict proper use and what assistance patients require to ensure optimum efficiency through our database (250 billion in losses attributed to non-compliance in 2014 according to the IMS Health Institute). In order to do this, we will collaborate with patients’ associations and healthcare professionals in a similar manner to the programme developed recently for psoriasis: 9 patients out of 10 are not correctly managed. We developed a programme whereby the pharmacist plays a key role in identifying and directing patients to relay organisations. The fact that he/she knows the patient clientele very well enables him/her to play a determining role in the dialogue with people and in directing them. In your opinion, what role does secondary and tertiary prevention play in the chronic disease management programmes in France? Have you noticed any changes over the past few years? In the hospital setting where, over the past few years the management of acute pathologies has been developed to the detriment of chronic pathologies, creating professional networks between private practice and hospitals can contribute to initiating continuity of care since more and more diagnoses are established in private practice. The significant and very rapid development of new healthcare technologies enables us to envisage innovative solutions for better communication, like telemedicine for example, which provides very good results in Scandinavian countries where it is practised. With the rise in technologies, we should address certain legitimate fears and reservations on the part of professionals and the population. If we look at the case of healthcare data that is collected, technical means exist to make gathered information anonymous and secure. Of course, there is no such thing as zero risk. But should a 99% benefit be forbidden because of a low risk of about 1%? A simple solution would be to let the patient carry his/ her personal medical record and thereby make his/her own decision concerning the communication of that data. What do you expect from an initiative like this? How do you plan to mobilise the different stakeholders in France to act in favour of the development of secondary and tertiary prevention of chronic diseases? Twenty (20) countries participate in the AbbVie initiative to write a report on the secondary and tertiary prevention of chronic diseases. Our goal is to illustrate the possibilities for improving our healthcare systems and to share the fruits of these reflections beyond our respective frontiers with all the healthcare stakeholders. We are inspired by what is already being done in the field and what is working. That is why the approach chosen for this work is particularly interesting. It is based on interviews with participants in the field with a variety of profiles, who share with us the way that they really experience secondary and tertiary prevention on a daily basis. But we also bear in mind the importance of not producing just another report or of limiting ourselves to the consideration/ dissemination of ideas. Our desire is to advance to the implementation phase, to carry out firmly reality-based field testing in order to remain pragmatic. Experimenting and adapting are required to improve our actions. This paper should be read like an action guide. We strongly believe that the pharmaceutical industry should contribute to the evolution of our healthcare system beyond medicines. DENIS HELLO 5 introdUction With therapeutic progress many diseases that used to rapidly result in death can now be managed even though they remain incurable. They affect people who become long-term patients. The World Health Organization (WHO) has grouped them together under the term chronic diseases. Patients must learn to live with their disease while playing as active a part as possible, i.e., not remaining just «patients». The considerable increase in the number of people living with a chronic disease has drastically changed our outlook on people who suffer from them and the way in which we help them. It also leads us to reconsider our healthcare system built historically to respond to medical emergencies. In this «epidemiological transition» (Haut Conseil de la Santé Publique, 2013, p.79), the extension of life expectancy is no longer the only priority, and certainly not without regard for cost. Improving the quality of life, developing autonomy, combating social inequalities in healthcare and encouraging social participation have also become priorities. These objectives therefore pose the question of individual and collective choices. Once clarified, these choices should be understood and respected with a core of human dignity. In this context, prevention takes on new dimensions; from sharing the medical decision right up to social assistance for the most vulnerable, including early screening and education on high health risk behaviours. 6 Secondary and tertiary preventive measures are flourishing on French territory. They are carried out by various professional bodies, and first and foremost by patients themselves. This text pays homage to these field experiments and to the people who show their devotion every day. An attempt is made to derive converging points of interest for the present and for the future. The message from the pioneers to whom we should listen is taken into account. They ask us to base prevention more firmly on the protection of the individual through consideration of his/her behaviours and his/her individual life process. They emphasize the human dimension, since prevention is so focused on frailties often endured, to provide the greatest advantages to personal development and autonomy. They show us the way, with concrete examples, for prevention to become a part of daily life, no longer as a constraint but as a way of serving as life projects. Maybe as a start, to talk about it in a different way... To do this, a multidisciplinary scientific committee was formed with the institutional support of AbbVie. Its members conducted interviews with participants in the field and experts. The text is the result of their contributions and the consideration given after the interviews. Obviously, prevention constitutes a cornerstone of our public healthcare policy that should be thought through and debated with all the stakeholders. The right reflexes are learnt in the family setting and preventive measures are developed with healthcare professionals while taking into account the difficulties encountered on a daily basis by people who are ill. None of this can be envisaged without the support and commitment of our political leaders. This report does not by any means represent a summary or an exhaustive collection of national measures. Its goal is to contribute to the examination of the priorities to be given to the future secondary and tertiary preventive measures which will certainly increase in light of the rise in chronic diseases due to the ageing population and biomedical progress. Definition of preventions according to the World Health Organization (WHO) Main chronic diseases in France (in million - 2007) CANCER PHYCHOSIS ALZEIMER’S DISEASE 0,89m ASTHMA 0,7m 3,5 M 0,9m RENAL FAILURE 2,5 M 3M DIABETES RARE DISEASES 2,5 M 3M CHRONIC BRONCHITIS www.sante.gouv.fr/IMG/pdf/plan2007_2011.pdf «Primary prevention is defined as all the measures aimed at decreasing the incidence of a disease, and therefore at reducing the occurrence of new cases or delaying the age of its occurrence.» Secondary prevention «aims to decrease the prevalence of a disease, either the number of cases over a given period, or the number depending on the incidence, and the duration of the disease. It covers the measures to be taken from the very moment when signs of the disorder or disease appear in order to counteract its progression.» Tertiary prevention «intervenes at the stage where it is important to decrease the prevalence of chronic afflictions or recurrences and to reduce the complications, disabilities or relapses resulting from the disease», World Health Organisation (1984): Glossary from the «health for all». Geneva: WHO Editions «The medical and administrative system for long-term illnesses aimed at the medical and financial management and care of these diseases has progressively become unsuitable: today, it does not provide the means to establish a basis to improve practices, comply with the control of health expenditure, or ensure equity in the allocation of the amount the insured person actually pays.» (Haut Conseil de la Santé Publique, 2009, p.10) «Cancer is also the primary cause of avoidable mortality. In fact, in light of current knowledge on cancer risk factors, it is estimated that 80,000 deaths could be avoided every year by individual or collective preventive measures.» (Plan Cancer 2014-2019, p.9) «There is a type of consensus on prevention but in reality, nothing changes. Talks are not backed up by financing.» (Dr. Catherine Corbeau) 7 key points A neW type of protection relAted to lifestyles And life trAJectories 1. A basic principle Indispensable primary prevention: making health a daily concern. 2. A key moment To retard the development of a chronic disease: it is better to act quickly. 3. Strong measures The common denominator of the inter-professional connection: making treatment education an action and no longer an intellectual stance. 4. A transversal global vision Reverse plans: preserving the cross-sectional vision of chronic diseases in each plan. hUmAnistic goAls 5. To tackle the disease head on Small health-promoting measures: taking responsibility of our behavioural choices. 6. Towards optimum allocation of our resources A secondary and tertiary preventive measures portfolio: coordinating the financial efforts for secondary and tertiary prevention. 7. The accessibility of preventive measures at the best cost/efficacy ratio The time for enlightened choices for prevention: testing preventive measures. 8. In search of good practices Research to train, train to research: uniting preventive and research practices for better training. from Words to sUstAinABle BehAvioUrAl chAnges 9. A prevention passport Autonomy is gained step by step: encouraging each preventive action. 10. So many misunderstandings The myth of the rational human: using preventive healthcare words that reach people and have a lasting effect. 11. E-Health releases energy New technologies as the prevention accelerator: potentiating the benefits of secondary and tertiary prevention products, programmes and services. 12. To overcome resistance due to conceptual misunderstandings A conceptual clarification emergency: (re)defining the words of prevention. 8 Part I A new type of protection related to lifestyles and life trajectories 9 1 a basic principle indispensABle primAry prevention: mAking heAlth A dAily concern. A revieW Primary prevention campaigns are not always able to reach the most vulnerable people in terms of the main modifiable risk factors that enable the prevention of diseases: smoking, alcohol consumption, physical inactivity, malnutrition. These people appear to be impervious to the messages or too preoccupied by other difficulties. Sometimes changing a few habits is enough to have major impacts on health. But, how do you make health a life priority? Considerable efforts have been made to prevent road accidents. Is as much being done in the prevention of chronic diseases? A goAl To encourage health-promoting measures against major risk factors, by making the measures accessible and intelligible to each and everyone. A possiBle solUtion Use social networks in addition to the standard media to reach a larger number of people and in a repetitive manner. This will take place through greater involvement by the participants in the school system, the working world and that of social assistance. eXAmple of A primAry preventive meAsUre «Prevention should be integrated in school programmes at a very early stage in the form of health education in broader terms. Good dietary balance with regular intake of fruits and vegetables, avoiding foods high in fat and fast sugars, which are factors that contribute to overweight, regular physical activity and smoking cessation are essential behaviours to inculcate in children in order to have a chance of perpetuating them in adulthood», (André Vacheron, 2013, Rapport I du groupe de travail «culture de prévention en santé» de l’Académie Nationale de Médecine, p. 8). «It is a sedentary lifestyle that kills and not physical activity.» (Dr. Alexandre Feltz) «In humans, three quarters of all avoidable deaths can be avoided by changing individual behaviours.» (Rapport Flajolet, 2008) www.sante.gouv.fr/IMG/pdf/Rapport_Flajolet.pdf 10 illUstrAtions OTHER MEDICAL GOODS, €196 PREVENTIVE MEDICINE, €52 MEDICINES, €525 PUBLIC HOSPITALISATION, €992 TRANSPORT, €63 THERMAL TREATMENTS €5 ANALYSES, €66 coMPosition in ValUe (cUrrent € Per Person) oF the diFFerent iteMs oF the total health eXPenditUre in 2012 http://www.irdes.fr/ EspaceEnseignement/ ChiffresGraphiques/ Cadrage/DepensesSante/ ConsoMedicaleTotale.htm DENTISTS, €161 PARAMEDICS, €189 PRIVATE HOSPITALISATION, €309 PHYSICIANS, €302 Source : www.ecosante.fr, Données : Drees, Comptes de la Santé ; Insee Main risK Factors in chronic diseases UNDERLYING COMMON MODIFIABLE INTERMEDIARY SOCIO-ECONOMIC, RISK FACTORS RISK FACTORS Unhealthy diet High blood pressure CULTURAL, POLITICAL AND ENVIRONMENTAL DETERMINANTS Sedentary lifestyle Smoking NON-MODIFIABLE Globalisation RISK FACTORS Urbanisation Age Population ageing Hyperglycaemia Blood lipid abnormalities Overweight/obesity Heredity Source : www.who.int/chp/chronic_disease_report/media/information/factsheets_FR_web.pdf «France sorely lacks a culture of prevention. It is still too dependent on the State and healthcare professionals. Bur prevention should be everyone’s concern, in order to have early screening and to prevent complications. Millions of patients in France do not pay attention to themselves.» (Claude Dreux) 11 2 a Key moment to retArd the development of A chronic diseAse: it is Better to Act QUickly. A revieW Late diagnosis, often at an advanced stage for neuro-degenerative diseases, heart diseases, diabetes, cancer and respiratory diseases, leads to various consequences which, at best, might have been prevented and at least, reduced. Alzheimer’s disease, high blood pressure, type 2 diabetes, breast cancer and prostate cancer, COPD, HIV and depression are the chronic diseases that are most well-known by the general public. Progress is being made in the precision of population screening and early diagnosis of serious diseases. They currently enable earlier and earlier detection, even before the first signs are felt by the patient. As a result of this progress secondary prevention strategies can be implemented at early stages of the disease thereby making it easier to modify its development, prevent certain cases of recurrences and minimize collateral damages. These strategies prove to be even more effective when they are initiated early. Unfortunately, through the lack of knowledge of these benefits, refusal to accept being ill, notably when no cure is available, by lack of attention to self, for fear of feeling different or of how one is perceived by others or through the negligence of friends and relatives, our fellow citizens undertake few secondary preventive measures. They are put off until later, often much too late. A goAl To accompany all measures of early detection or screening of a chronic disease with messages indicating that secondary preventive measures are beneficial. A possiBle solUtion There are simple questionnaires for alerting or reassuring someone regarding a particular health risk in two minutes. These detection tools encourage doing a screening test when necessary. The sooner they are proposed, the better will be the impact on the progression of the disease. However, this does not suffice; all stakeholders should be mobilised to deliver the message concerning the fact that there are things to do regardless of the result of the questionnaire or test. The entire issue of initiating secondary and tertiary prevention hinges on this. This message is everyone’s business; doctors, healthcare professionals, educators, patients, relatives and colleagues. eXAmple of A secondAry preventive meAsUre Pharmacists participate in identifying patients with a risk of diabetes. They frequently meet potential patients. Through a simple, precise and scientifically prepared interview, they can therefore encourage people to have a screening consultation when the risk indicators are present. In parallel, they provide information on secondary prevention strategies that can be implemented early to delay the development of the disease. http://www.cespharm.fr/fr/Prevention-sante «In 5 questions, pharmacists or general practitioners know how to identify the risks of diabetes.» (Gérard Raymond) 12 3 strong measures the common denominAtor of the inter-professionAl connection: mAking treAtment edUcAtion An Action And no longer An ApproAch or An intellectUAl stAnce. A revieW 9 million of people are declared to have a long-term illness in France. Close to 15 million suffer from a chronic disease, i.e., a quarter of the population according to the French Public Health High Council. These people should benefit from a personalised treatment education programme integrated in their healthcare process. However, patient treatment education is currently still an intellectual stance or an accessory measure and not a systematic service, due to the lack of organisation, training and adequate financing. The structural divides between medical and social are at the root of the difficulties. A goAl To make treatment education the core that connects healthcare, education and social assistance professionals. A solUtion There will never be just one secondary and tertiary prevention process. There should be individual processes in a general science-based framework. However, the current system is not adapted to the notion of an individual process: it is too rigid and does not adapt to the needs of patients which do not arise at the same time, according to the person. A more dynamic personalised vision of needs is required. The role of secondary and tertiary prevention is to assist patients to overcome adversities by taking charge of their own disease. A regional committee that integrates healthcare, prevention and education professionals, communities and patient representatives (Inter-associative Health Groups for example) could create a patient treatment educational process as a group of services that associate the entire chain of professionals and from which the patient could find resources according to his/her needs. The major subjects would be regularly broached (proper use of medicines, physical activity, nutrition, management of emergency situations, social assistance, the role of caregivers, etc.). The patient and the professionals who take care of him/her would create this individual process within the group of services. Such an offer of services would greatly facilitate the connection between professionals and patients in the framework of their daily lives. illUstrAtion of A recUrrent proBlem in tertiAry prevention Work hours are systematically underestimated and reduced to one-to-one time spent with the teacher. Allotted credits cannot cover everything, especially for experiments outside of the hospital. All the people asked request clear precise financing of treatment education measures considering all the stages of a patient treatment education programme: the design of the programme, including examination with expert patients, coordination with healthcare professionals, merging the educational and social aspects, preparing sessions, making appointments, the programme procedure with in situ movement, preparation of the location, the session itself, post-session exchanges, follow-up with evaluations, analyses and reports to the patients, professionals and guardians. 13 illUstrAtions estimate of the total eXpenditure for prevention based on the national healthcare accounts for 2002 in the THE Amount in millions of euros excluding HMGC HMGC (isolated (“Individual prevention prevention” item in HMGC) in the NHA) Total prevention THE in addition to the THE In the CHE “Collective prevention” item in the NHA Total prevention A. To prevent the occurrence of a disease or undesirable condition 1,096 2,121 3,217 2,233 5,450 B.To screen diseases 2,089 390 2,478 0 2,478 C. To manage the risk factors and early forms of diseases 2,567 0 2,567 0 2,567 Total “Prevention and public healthcare programmes” 3,862 2,511 6,373 2,233 8,606 Total “Excluding prevention and public healthcare programmes” 1,889 0 1,889 0 1,889 Total prevention expenditure (millions of euros) 5,751 2,511 8,262 2,233 10,495 the HMGC 4.4% - - - - the THE 4.3% 1.9% 6.3% - - the CHE 3.5% 1.5% 5.0% 1.4% 6.4% In % of NHA: National healthcare accounts; THE: Total health expenditure; HMGC: Healthcare and medical goods consumption; CHE: Current health expenditure Source: DREES-IRDES Estimate of preventive expenditure and expenditure per pathology according to the National health accounts distriBUtion of the heAlthcAre eXpenditUre eXclUding the prevention eXpenditUre, By mAJor diAgnostic cAtegory Circulatory system diseases Mental disorders Musculoskeletal and connective tissue diseases 12.6% 10.6% 9.0% Respiratory tract diseases Oral and dental diseases Tumours Trauma and poisoning Diseases of the eye and accessory organs of the eye Genitourinary tract diseases Digestive tract diseases (excluding oral and dental) Ill-defined signs, symptoms and morbid conditions Endocrine, metabolic, immune system and nutritional diseases Nervous system diseases Pregnancy and delivery Infectious and parasitic diseases Subcutaneous and cutaneous diseases Diseases of the ear and mastoid process Blood and haematopoietic organ diseases Perinatal disorders Congenital diseases 0% 7.7% 7.6% 7.5% 6.9% 5.7% 5.6% 5.2% 4.7% 4.2% 3.7% 2.5% 2.1% 1.7% 0.8% 0.8% 0.5% 0.5% 2% 4% 6% 8% 10 % 12 % 14 % Annotation: of the 107.6 billion euros of healthcare, excluding preventive care, that were distributed between the different pathologies, the circulatory system diseases represent 12.6% of the expenditure Source: DREES-IRDES Estimate of preventive expenditure and expenditure per pathology according to the National health accounts 14 «People who are secure enough and who feel like they are involved in their health are the first to take advantage of treatment education.» (Dr. Catherine Corbeau) «For people living in a precarious situation and who are more often affected by diabetes and the co-morbidities (overweight, etc.), a joint social and medical approach is essential. But it is difficult to find the financing because this approach is too social for healthcare and too health-oriented for social services.» (Dr. Catherine Corbeau) «Moreover, activities that contribute to the involvement and control by the person suffering from a chronic disease of his/her care process should be encouraged, notably treatment education, the use of disease management principles and their implementation for each person with a chronic disease (case management).» (Rapport La prise en charge et la protection sociale des personnes atteintes de maladie chronique, Haut Conseil de la Santé Publique, 2009, p. 9) «Reinforcing these patients compliance with prevention and assisting them to change high-risk behaviours is a new personalised management challenge in oncology and will contribute to the long-term reduction of morbidity and mortality.» (Plan Cancer 3, p.72) «Recommendation 9: To establish resource centres for healthcare professionals that offer validated training, tools and programmes concerning treatment education for patients with chronic diseases.» (Haut Conseil de la Santé Publique, 2013, p.101) 15 4 a global transversal vision reverse plAns: preserving the cross-sectionAl vision of chronic diseAses in eAch plAn. A revieW National plans by disease, organ or organic function have been multiplying since the 2000s. They have the advantage of media-staging a special healthcare cause for which prevention will be mentioned. The other side of the coin is that these plans split up preventive measures. They divide up diseases. They conceal others that are less frequent. They juxtapose organ or function specialist professionals. In certain cases they put them up against each other. One of the major problems with this categorising approach is the downplaying of the importance of co-morbidities (presence of other diseases), the psychological consequences (depression, anxiety, cognitive disorders, etc.), social repercussions (sick leave, precariousness, the need for family, social and legal assistance, etc.). It makes the traditional hospital system inoperative and stems initiatives. It slows down innovation. A goAl To concentrate on the common points shared by chronic diseases and create new professions that are useful to most patients. A possiBle solUtion To escape the divide between sanitary action and social action, care and prevention, health and work, what better way than to create new professions? Among these hybrid transversal professions for patients with complex chronic diseases, there is the «case manager», widely tested in Canada (see the 2006 article by Jean Bourbeau et al., cited in the bibliography). This profession requires solid experience and good knowledge of the healthcare, education, social and administrative sectors. It is currently proposed for complex case management of Alzheimer’s disease (see the Alzheimer’s disease plan cited in the appendix). The case manager is responsible for making a healthcare assessment, providing support for patients and assisting them to cope with the disease by organising the choices of different medical and social facilities that can ensure management. He/she becomes a sort of counsellor with whom solutions that are most appropriate to emergency and routine situations can be found, through discussions with the patient, family and professionals. He/she establishes a gradual personalised solution. He/she evaluates the effects. The case manager reinforces the relations between local professionals to the patient and his/her family’s benefit. He/she prevents frequent visits to emergency services. At the same time, he/she helps to ensure that the disease takes the right place in the patient’s life; its entire place but no more or less. He/she also helps to make the connection with local patients’ associations. eXAmple of secondAry And tertiAry preventive meAsUres The interviews emphasized the accelerating role of national plans implemented by public authorities, in particular, the Cancer Plans, the COPD Plan, the Alzheimer’s disease Plan and the National Health Nutrition Programme (see Appendices). A demand emerges for National Plans per disease (a future Diabetes Plan?), or even per organ (a future Heart Plan?). The grouping of patients’ associations that has taken place over the past few years demands the creation of new professions, in particular, case managers. The French Public Health High Council [Haut Conseil de la Santé Publique] (2009, p. 51) acknowledges the utility of case managers in «personalised care plans for people with chronic diseases considered to be at high risk due to the severity of their pathology, the existence of co-morbidities or an unfavourable social situation». 16 illUstrAtion Position oF the «case ManaGer» in the PreVention sYsteM (accordinG to nolte and McKee, 2008) Level 3 Case management Very complex patients Level 2 Disease management Patients at high risk Level 1 Treatment education by the primary healthcare team 65-80% of the patients with chronic diseases «To develop support in healthcare processes; in particular, by promoting a managing function for the healthcare process that consists of assisting people with chronic diseases in all the steps for medical, social, administrative and financial management. This function should be defined, recognized and assigned to existing professionals, or developed as a new profession.» (Rapport La prise en charge et la protection sociale des personnes atteintes de maladie chronique, Haut Conseil de la Santé Publique, 2009, p. 12) «Strategic goal 5: to improve the definition and development of the notion of transversality in order to minimize breaks in management related to multiple specific systems for pathologies. Strategic goal 6: to develop the approach that is common to all chronic diseases, notably for treatment education, training caregivers, making patients autonomous, etc.» (Haut Conseil de la Santé Publique, 2013, p.99) «In France, non-compliance also concerns almost half of all patients with chronic diseases for which the number does not cease to increase. Its cost is estimated at 2 billion euros per year, days of induced hospitalisation at 1,000,000 and deaths at 8,000.» (The Concorde Foundation Health Commission, 2014) 17 Part II Humanistic goals 18 5 to tacKle the disease head on smAll heAlth-promoting meAsUres: tAking responsiBility of oUr BehAvioUrAl choices. A revieW A modern healthcare system can no longer be based uniquely on the notion of «management». It allows people with chronic diseases to remain very passive while awaiting a miraculous cure. We cannot cherish the hope to treat all diseases through genetics or biotechnology overnight. That would be creating false hope over the medium term. At the other end of the spectrum, the notion of «management» raises preventive healthcare professionals to the ranks of freedom censors and head supervisors of virtuous behaviours. Even more so since they now have electronic tools to monitor these behaviours. Therefore, many are those who see prevention as an impediment to personal freedom, an obstacle to life and not as a means for improved living. These misunderstandings lead to a crisis in confidence between preventive healthcare professionals and patients. Professionals impose living conditions on patients, which are impossible to uphold in the long run. Patients demand immediate benefits from professionals. A goAl To become a participant in one’s preventive healthcare in order to serve that of others. A possiBle solUtion “Contracts” on the main avoidable risk factors could connect each patient with a chronic disease to these professionals, and in this way get both parties involved. Professionals should inform the patient’s friends and relatives of this more attractive approach. eXAmple of A tertiAry preventive meAsUre «Approximately 20% of all sleep apnoea patients with devices in France do not use or rarely use their Continuous Positive Airway Pressure (CPAP) device during sleep. This is why a telemonitoring project was implemented. If the patient sleeps for at least 3 hours per night, 20 days out of 28, reimbursement is continued. If this decreases, an attempt is made to re-motivate the patient. If the behaviour does not change, the fixed rate can be reduced or removal of the device for use by another patient can be envisaged» (Philippe Carrier). «The feeling of bad luck is the worst enemy of prevention.» (Dr. Catherine Corbeau) «Patients with a chronic disease are often silent. They should be able to speak freely, notably at work and, if necessary, with the support of a health mediator.» (Jean-Luc Plavis) 19 6 toWards optimum allocation of our resources A secondAry And tertiAry preventive meAsUres portfolio: coordinAting the finAnciAl efforts for secondAry And tertiAry prevention. A revieW The medical expenditure for people who are under the Long-term Disorders scheme is 100% reimbursed by Social Security. This status only covers half of the chronic diseases, which in principle are the most costly. However, the needs related to these diseases go well beyond treatments and care. They are also social and professional in nature due to the impact of the disease on private and professional life. In addition, the amount patients actually pay is often high. In terms of preventive healthcare professionals, the people interviewed are disheartened by the small amount of funding for secondary and tertiary preventive measures due in particular to the existence of multiple organisations (see Appendices preventive healthcare sector organisations), foundations, private/public negotiators, etc. They note a dispersion of individual energies, an erosion of individual will due notably to the burden of administrative records and the evaluations to be submitted for each action. Ultimately, actions are fragmented and of short duration. In its 2011 report, the French Court of Audit emphasizes that: «no stakeholder has a global vision of the means allocated to prevention. According to the scope it is attributed, the amount of expenditure allocated to it varies between less than one billion euros to more than ten billion», (Rapport de la Communication à la commission des affaires sociales de l’Assemblée Nationale sur «La Prévention Sanitaire» par la Cour des Comptes, 2011, p. 9). A goAl To allow the time required for a secondary or tertiary preventive measure to become established. A period of at least four years is essential to change individual habits and professional practices. A possiBle solUtion It has become an illusion to believe in a single national preventive healthcare organisation because actions are so widely oriented by outstanding personalities, different geographic areas, heterogeneous cultural environments and specific legal organisations. All financing should be concentrated in a single regional organisation. Decisions should be taken by a committee comprised of representatives of professionals and patients. Measures could be grouped together in a set of offers in validated programmes with scientific bases. A portfolio of programmes could thereby be available to each patient, on which he/she could draw according to his/her needs and progression. Once the credits are used up, the utility for the patient would be re-evaluated before envisaging a new programme requiring additional individual or welfare financing. eXAmple of secondAry And tertiAry preventive meAsUres «Initiatives are under way for the compilation of all the individual information required for care and preventive measures in a single database for children with diabetes», (Jean-Jacques Robert). 20 «The coordination of advisory and expertise facilities is insufficient: their competences are split up and sometimes redundant and competing. The mandatory health insurance organisations that participate in actions by the State and the complementary insurances are developing their own measures.» (Rapport de la Communication à la commission des affaires sociales de l’Assemblée Nationale sur « La Prévention Sanitaire » par la Cour des Comptes, 2011, p. 11) «Axis 2: Extending healthcare medicine to prevention Recommendation 7: long-term financing of treatment education in private practice and in the hospital setting.» (Haut Conseil de la Santé Publique, 2013, p.101) «Lifelong prevention for all ages and all socio-professional categories, with measures adapted to the different targets should be implemented. All the stakeholders are concerned: public authorities, healthcare professionals, parents, friends and relatives, associations and the national education system, for prevention from a very young age and until the end of life. Therefore, it seems to be important to «de-medicalise», «de-centralise» and «de-politicise» prevention in order to place secondary and tertiary prevention at the core of civil society and enable other stakeholders to take action.» (Gérard Raymond) 21 7 accessibility of preventive measures at the best Quality/price ratio the time for enlightened choices for prevention: testing preventive meAsUres. A revieW The term profitability seems to be a taboo in prevention. France is significantly behind in this field, notably because of a lack of medico-economic studies on the subject. In addition, access to health figures and the complex methodologies used make it difficult to publish indicators capable of showing the «quality/price» ratio of preventive measures. In addition, it all depends on the elements taken into account to evaluate this profitability: human or monetary, formal or informal, material or immaterial, direct or indirect costs. Prevention can sometimes be financially costly and it is not possible to weigh the short or medium-term financial profitability if the human benefit is not taken into account. With compulsory control of healthcare expenditure, it becomes difficult to decide which secondary and tertiary preventive measures should be chosen. Finally, there are few rigorous studies that evaluate and compare the effectiveness of non-pharmacological interventions, and even fewer cost-utility analyses. A goAl To choose secondary and tertiary preventive solutions on the basis of interventional studies having shown the best cost/effectiveness ratio and calculations of returns on investments. A solUtion The choices of secondary and tertiary preventive measures should have more basis in the results of randomised controlled clinical trials that use medico-economic and psychosocial markers (cost/effectiveness, cost/benefit, morbidity, and indirect costs) and their syntheses, meta-analyses. This sector, called interventional non-pharmacological research, requires further structuring and standardisation of its procedures as is the case for clinical drug research (http://www.iceps.fr/conference2015/). The advent of Evidence-Based Medicine and Evidence-Based Prevention will facilitate this change. One hope is that the number of non-pharmacological trials increases exponentially, including in France, as the iCEPS attests (www.iceps.fr). eXAmple of secondAry And tertiAry prevention A Canadian randomised controlled trial by Bourbeau et al., published in Chest Journal in 2006, tests the benefits and cost/effectiveness of a case manager for patients with Chronic Obstructive Pulmonary Disease (COPD). The case manager supervised 50 patients by telephone interviews. The trial shows an improvement in patients’ quality of life and a reduction in un-programmed care. The average savings per year and per patient was 1,564 Euros. 22 illUstrAtion What are the preventive measures that cost the least and which ones are most effective? To answer this question, studies should measure more than just mortality and direct costs, and morbidity and indirect costs should be taken into account, according to Claude Dreux of the French Academy of Medicine. Interferences with the current treatments should also be examined. It should be proven thereby, that prevention is profitable. Antoine Flahault of the French Academy of Medicine pleads in favour of «prevention by proof». The French National Academy of Medicine encourages this type of study. http://www.academie-medecine.fr/ «In comparison to the standard criteria considered for the evaluation of drug treatment efficacy, studies that evaluate non-pharmacological treatment efficacy [hygiene and dietary rules, psychological treatments, physical therapies] for the most part are methodologically inadequate.» (Haute Autorité de Santé, Rapport Développement de la prescription de thérapeutiques non médicamenteuses validées, 2011, p.40) «Axis 3: Facilitating the daily lives of patients Recommendation 11: to improve the scientific knowledge concerning the efficacy and medico-economic importance of treatment education and support of patients in chronic diseases. To develop implementation studies of programmes with proven effectiveness.» (Haut Conseil de la Santé Publique, 2013, p.102) 23 8 in search of good practices reseArch to trAin, trAin to reseArch: Uniting preventive And reseArch prActices for Better trAining. A revieW Significant heterogeneity in secondary and tertiary preventive practices can be noted in the field. Research is partitioned among scientific disciplines. Interventional research is less recognized than basic research which attempts to understand mechanisms at play, principles of action and processes. The content of initial and continuing education is not standardised. As a result, the subject of prevention becomes optional in training, while it should be a common base in education, health, sports, technology, social assistance and legal professions. Interviews reveal administrative and ideological barriers in the education, work and social assistance sectors. Dogged scepticism also persists on the role of expert peers (transmission of messages and good practices by trained patients), caregivers (contribution of friends and relatives) and volunteers (participation in a world day) in secondary and tertiary preventive measures. A goAl To make teaching of evidence-based prevention mandatory in professional degree programmes for stakeholders who will be in contact with people with chronic diseases. A solUtion Evidence-based preventive healthcare teaching should be an integral part of training in professions intended for contact with people with chronic diseases in order to re-establish a balance between the chronic and the acute. It would be useful to invite expert patients to these training courses. University clinical teaching posts similar to those that exist for medicine between a hospital service and a speciality could be allocated to prevention, which would also make it possible to bring research closer to the needs in the field. Learned societies, which are the core connections between practice and basic research, should become more involved in the identification of better preventive practices and in the distribution of knowledge. eXAmples of secondAry And tertiAry preventive meAsUres The French Cardiology Federation is mobilising to encourage cardiologists to follow the European guide which is regularly updated on identified risk factors and the strategies for modifying these factors. http://www.fedecardio.org/ A very recent alliance has been established among the major learned medical societies in relation to chronic diseases. http://www.alliancechronicdiseases.org/ In the framework of the Plan to Improve the Quality of Life of Persons with Chronic Diseases, a call for tenders was launched in 2012 by the French General Health Department (the Ministry of Health) for research aimed at evaluating the effectiveness of treatment education programmes. http://www.iresp.net/iresp/files/2013/04/Texte-AAP-Education-th%C3%A9rapeutique-du-Patient.pdf At the Montpellier faculty of medicine, expert patients who are members of a healthcare network (for example: AIR+R www.airplusr.fr) participate in the training of physicians to provide them with a clearer understanding of the chronic nature of some diseases and the problems of daily life as opposed to emergency situations. 24 «There is a need for expert patients both for patients and for the training of professionals.» (Jean-Luc Plavis) «To be effective, preventive measures require the deep conviction of practitioners, physicians, pharmacists, biologists and all the healthcare participants who should be well-informed on recommendations and the scientific data on which they are based. They also require the will to take enough time to explain the behaviours and required treatments and to motivate patients. Finally, they involve adequate specific training in certain areas such as diet, smoking or alcohol cessation; training that should be integrated in the medical degree and continuing professional education programmes.» (André Vacheron, 2013, Rapport I du groupe de travail «culture de prévention en santé» de l’Académie Nationale de Médecine, p. 5) 25 Part III Assisting with behavioural compliance 26 9 a prevention passport AUtonomy is gAined step By step: encoUrAging eAch preventive Action. A revieW A person with a chronic disease is doubly penalized. He/she is first penalized by the disease which, with its full complement of pain, fatigue, doubts, questioning of social status, etc., does not heal. He/she is also penalized as a result of misunderstanding by the people around him/her, starting with the professional milieu, and different social and environmental obstacles. One might think that the priority would be to help patients to gain autonomy and improve their quality of life. On closer examination, it is astonishing to note the number of medical indicators focused on a deficit, a deficiency or a failing. From the patient’s standpoint, these indicators focus on what is definitely lost; they have a guilt-provoking effect. Lung cancer is often due to smoking and the patient knows this. Medical indicators show respiratory losses. They can lead to the neglect of residual capacities in the patient’s mind, and finally encourage him/her to smoke although he might greatly benefit from cessation. Still, seeing the glass as half full and not half empty is a major stimulus for behavioural change. A goAl In all secondary and tertiary preventive measures, to endeavour to target modifiable health factors, autonomy and quality of life more precisely by a change in behaviour. Next, to give a better report to professionals and patients of progress made, even if it is minor. A possiBle solUtion A multidisciplinary evaluation of «health resources» could be recommended to each person at key stages of life (childhood, adolescence, beginning of adulthood, fifties, retirement, 70 years of age). It could be systematised in people with chronic diseases. It could use scientifically and clinically validated tests. These could indicate aspects that can still be modified by a change in behaviour. The follow-up of these evaluations should be reported in a personalised «prevention passport». This information should be appropriate to each bearer and disclosure should remain at their discretion. They could guide small daily health, autonomy and social participation-promoting actions and encourage their pursuit. eXAmple of primAry prevention The Montpellier faculty of sports, which is highly involved in the subject of health, and the Languedoc-Roussillon Mutualité Française offer people in their fifties free scientifically-validated convivial tests to evaluate their physical and psychological capacity to practice a physical activity. An individualised report is given at the end of the halfday. It directs participants to the most appropriate approved local facilities. It encourages medical consultation, if necessary. Participants are invited to attend a conference on the benefits of physical activities for health. An INPES (French National Institute of Preventive Healthcare and Health Education) guide on preventive healthcare for people in their fifties is offered. Practical workshops complete the plan. www.resolution50.fr 27 eXAmple of secondAry And tertiAry preventive meAsUres The Strasbourg Urban Community offers a system whereby physical activity is prescribed for people with chronic diseases after a physical capacity evaluation. Each participant can follow their progress by counting the number of steps they take each day using a pedometer, an indirect indicator of a sedentary lifestyle. Prevention is thereby a vector of well-being and autonomy and not a prerequisite. The initiative adds no more layers to the existing plan. It respects the healthcare system that is in place. It relies on what exists to reinforce its connections. The advantage is the coordination of all the political, medical, paramedical, social and associative stakeholders over a common project. http://www.sportetcitoyennete.com/revues/juin2013/feltz_revue_sportetcitoyennete_juin2013.pdf «In prevention, you should think in terms of bonus and not in terms of surcharge.» (Gérard Raymond) «You should make an impact on reason and the heart because prevention is really a type of humanism.» (Jean-François Mattei, 2013, Rapport I du groupe de travail «culture de prévention en santé» de l’Académie Nationale de Médecine, p.5) 28 10 so many misunderstandings the myth of the rAtionAl hUmAn: Using preventive heAlthcAre Words thAt reAch people And hAve A lAsting effect. A revieW We need to put an end to the myth of the rational citizen who listens to a preventive healthcare message, who understands what should be done, and who applies the right formulae for daily life. Most of our decisions and actions are guided by automatic neuropsychological and emotional processes. Therefore, these processes are not controlled by careful reflection which requires great mental concentration. In addition, these processes are polluted by over-information of contradictory messages from different pressure groups. This is true for patients and their friends and relatives as well as healthcare professionals. A goAl To develop a strong, clear initial incentive that is sustainable enough to «break down» the false beliefs, bad habits and routine behaviours that are harmful to health. A possiBle solUtion It would be apt to find powerful preventive healthcare messages based on layman’s knowledge of the targeted persons. More emphasis should also be placed on neuro-scientific bases so that they can be better transmitted, notably through short, clear, concrete messages that can be used immediately, and if possible, multi-modal messages (in one message, combine a picture, a sound, an emotion, etc.). Preventive healthcare professionals should adapt the content and duration of contact to the distinctive feature of each situation (complicated period of life, pain, precariousness, disability, generational need). The messages should therefore be powerful and positive (a sort of «well-being» coaching). They should place the emphasis on what can be gained, notably over the short term. Case reports and testimonials would be useful. They should minimize long-term benefits and the quality of «pathos». In terms of form, fact sheets should provide detailed recommendations. The illustrations should address all cultures and be capable of reaching populations living in precarious conditions. One should also not forget that too much communication can be harmful, making the message confused. eXAmple of A secondAry preventive meAsUre «It is useful to create multiple-partner health information platforms on the Internet that group together: different medical, educational, legal and discussion communication media on chronic pathologies, from TV reports to the fact sheet, including detailed documents, interactive videos and newspaper articles», (Jean-Luc Plavis). The word «prevention» should not be used. This word is too professional and is not understood by all segments of the population. In fact, what would appear to be necessary is to transmit the information on prevention fluently and comprehensively with the right words for the right target. 29 illUstrAtion The phenomenon of the electronic cigarette is a good example. This new object is a way of bypassing a health risk, without medicine and by a new consumption. The use is still outside of the medical realm and remains connected to the notion of pleasure. «The recommendations of a few hundred pages are not read by professionals.» (Pr. Claude Le Feuvre) «It is difficult to apply the recommendations in the field, even when you participate in their development.» (Pr. Jean-Jacques Robert) «Global preventive healthcare messages are useful, and targeted messages, essential.» (Pr. Claude Dreux) To explain individual and collective choices to enable adaptation of behaviours in light of cancer «The French are currently exposed to many prevention messages transmitted in the media, on the Internet, or by the words of certain healthcare professionals who refer to a wide variety of potential cancer risk factors. This information from disparate non-deciphered sources create confusion and result in a loss of benchmarks which contributes to the attitudes of denial, inaction or individual prevention strategies based on false ideas. According to Baromètre cancer 2010, one third of the French think that nothing can be done to prevent cancer while epidemiology studies show that 40% of all cancers are due to exposure to avoidable risk factors related to our lifestyles and behaviours. Knowledge of these factors and their hierarchical classification are therefore important benchmarks that should guide individuals and society in their prevention strategies.» (Pr. Claude Dreux) 30 11 e-health releases energy neW technologies As the prevention AccelerAtor: potentiAting the Benefits of secondAry And tertiAry preventive prodUcts, progrAmmes And services. A revieW For a long time it was impossible to store health and prevention information and to group and analyse them in real time so that they could be used. The idea of an electronic medical record (EMR) accessible by all healthcare professionals and which is owned by the patient, dates back to the 1990s. Technological progress in the automatic measurement of health markers, digitization of exams, transmission, storage, data analysis and their restoration make solutions possible today that were unlikely twenty years ago. In parallel, they pose ethical, regulatory, misuse or even abuse problems: measurement without the knowledge of patients, abusive use of telemonitoring, infringement of personal freedom, the frequency of medical exams requested, world offer for a high-tech medical service, data ownership, confidentiality, fraudulent change of an exam result, unequal access, choice of form of reports, etc., Big Brother or Big Doctor? High-technology, information and communication companies’ interest in health issues is rapidly growing. Google is launching into health with its contact lenses. Orange is getting involved in telemedicine. Europe is supporting this extensive movement by financing many R&D projects, notably with its Horizon 2020 programme. Although economic models for new technologies applied to health have not yet been found, businesses in the sector are beginning to develop patient loyalty. Healthcare professionals have a limited amount of time to dedicate to each patient. Technologies will enable them to subcontract certain technical or administrative operations so that they can give more time to patients during consultation. These technologies will also develop remote connections. They will facilitate self-management of a disease outside of the consultation time. Computing solutions will help with taking medicines through an automatic reminder system. They will prevent wasting. www.psfk.com/future-of-health A goAl To make the new technologies serve patients and professionals by freeing up consultation time, not dehumanising it, but on the contrary focusing human means where they are essential, notably in secondary and tertiary prevention. A possiBle solUtion To support this technological revolution, it would be useful to make excellent before and after-sale service compulsory in order to ensure good use of these technologies. The prescription of a medicine with proven efficacy is not always followed by patients, so who knows what will happen with a technological tool? Good use will require an increase in the time of contact with someone to help with its proper utilisation. Professionals of these tools will therefore take on the role of educators for fragile people in order to assist them with the use of these new tools. They should have sound competences; both technical and educational. 31 eXAmple of A secondAry preventive meAsUre Health indicator measurements via a Smartphone can enable detecting risks and monitoring the progression of a disease. eXAmple of A tertiAry preventive meAsUre An Internet platform for a disease such as diabetes is being developed to provide better information for patients, families and professionals (Jean-Luc Plavis). The Website http://healthtalkonline.org/ is based on contents developed by patients who talk with patients. illUstrAtion Growth in the number of healthcare Applications on Smartphone is significant: from 17.000 in 2010 to 97.000 in 2012 (Research 2 Guidance, March 2013) «The design and use of new technologies concerning prevention is essential, with the contribution of a patients’ association.» (Jean-Luc Plavis) 32 12 to overcome resistance due to conceptual misunderstandings A conceptUAl clArificAtion emergency: (re)defining the Words of prevention. A revieW Audits carried out in the framework of this work show that the words used in prevention are not understood in the same way. This creates confusion among the stakeholders in the sector: professionals, patients, volunteers, families. A goAl To make the words of prevention understandable for everyone and shared by all professionals. A possiBle solUtion Explicit integration of prevention in the healthcare process could be a trigger. New presentation methods should be created. It would be useful to clarify the concepts of secondary and tertiary prevention in order to truly adopt them. It should be easy to consult and access them. eXAmples How can the notion of chronic disease be defined? The French High Health Council uses the aetiology of diseases, specific treatments and psychosocial consequences to provide the following definition: 1. the presence of a pathological condition of a physical, psychological or cognitive nature that is bound to last, 2. a minimum history of three months, or estimated to be as such, 3. an effect on daily life including at least one of the following three elements: a functional limitation on activities or social participation a dependence on medicines, a diet, a medical technology, a device or personal assistance the necessity for medical or paramedical care, psychological support, an adaptation, monitoring or special prevention that can be a part of a medico-social healthcare process», (Rapport La prise en charge et la protection sociale des personnes atteintes de maladie chronique, Haut Conseil de la Santé Publique, 2009, p. 11). 33 «Precariousness is the loss of self-confidence, confidence in others and in the future. The patient does not participate in anything. Prevention means thinking in terms of family, society and culture. It is difficult to regain this confidence; treatment education should contribute to renewing confidence in the healthcare system and strengthening people’s self-confidence through an approach that encompasses family, society and culture.» (Dr. Catherine Corbeau) «The notion of re-education is not adapted to children with diabetes.» (Pr. Jean-Jacques Robert) 34 conclUsion The goal of this document is to contribute to the prospective reflection on secondary and tertiary preventive measures. Interviews have shown to what extent these forms of healthcare prevention are everybody’s concern and should now move beyond talking, good intentions and sporadic initiatives. There is an urgent need for action to prevent the entire welfare system that is so dear to France from collapsing. Through the interviews and different reports that were consulted, it can be noted that France is confronted with a real paradox. Despite significant investments in the healthcare field (12% of the GDP allocated to healthcare), the country is in tenth place in Europe in terms of life expectancy without disability. The French are not interested in their health and even less in prevention. When they become interested, unfortunately it is far too late. And yet, even at that late stage, innovative preventive measures are beneficial for patients’ quality of life and for the management of health expenditures. «The prevention culture needs to be reinforced in France.» Experts who were interviewed are pushing for an in-depth reform of the secondary and tertiary prevention system. They plead for a more transversal organisation, therefore, one that is less siloed or multi-layered. They are asking for the means to take sustainable action. They demand more recognition and more confidence on the part of the authorities because they can now rely on the results of recent medicoeconomic studies. They would like to integrate the new information and communication technologies in their practice. They are helping new professions and new markets to emerge due to the convergence of the health, social, educational and working worlds. The benefits will be to everyone’s advantage and in particular those who are most vulnerable. By detecting diseases early, including those without a cure, and by reducing their biological, psychological, social and economic consequences, the prognosis can be considerably modified and some patients can be given the chance to start a new life. Good preventive health management through the initiatives noted in this text can enable a person to favourably modify their course of life, and the society to economise. The current revolutions in prevention, scientific, human as well as technological, are not aimed at reducing citizens’ sacred freedom, far from it. In a country and a context subject to health expenditure management, secondary and tertiary prevention resolutely pose questions of individual responsibility and decisions shared in the general interest. These issues are even more acute since recent research in humans show to what extent our behaviours influence our health positively or negatively, and have an impact on direct or indirect expenditures. Changing health behaviours on a microscopic level is acting in favour of a more effective and more equitable system of financing medical expenditures and social needs on a macroscopic level. It also means reflecting on the responsibility of citizens and the limits of the Welfare State. This text provides the opportunity to make people aware of secondary and tertiary treatments as complete healthcare treatments that fully correspond to the WHO’s definition of health. Naturally, these treatments have specific features. They require more time for human contact, more listening, more dialogue and more perseverance. But they should be recognized for their true worth. They make it possible to bring people who have become «invisible» because of a chronic disease back into society. Interventional research that evaluates the cost/effectiveness of prevention programmes will be determinant for overcoming so much resistance based on unfounded beliefs and fears. Many stakeholders have solutions that could be operational at this very moment. Decisions should now be taken quickly in order to orchestrate and dynamize a real prevention policy and pooling of these benefits. «The participants in the Conference are committed to: (…) reorienting healthcare services and their resources to the benefit of health promotion; sharing their power with other sectors, other disciplines, and even more importantly, with the population itself.» Ottawa Charter (WHO, 1986, p. 5). 35 scientific committee (in AlphABeticAl order) Claudine Berr, is a physician-epidemiologist and research director at INSERM (French National Institute for Health and Medical Research) Unit 1061 «Neuropsychiatry: Epidemiological and clinical research», Montpellier University. Her research work concerns studies in cognitive ageing. Edouard Bidou, Director Innovation and Development, Prévoir Francis Megerlin is a senior lecturer in Health Law and Economics at Paris Descartes University, GRADES Paris-Sud. 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The Daniel Rivière Report. www.ladocumentationfrancaise.fr/var/storage/ rapports-publics/144000035/0000.pdf 39 ABBreviAtions 40 AMP Medico-psychological assistance ANAP French national agency for institutional performance support ANSES French agency for food, environmental and occupational health and safety ANSM French national agency for the safety of medicines and healthcare products APA Personalised autonomy-based benefits APA Personalised autonomy-based benefits APA Adapted physical activities ARDH Hospital discharge benefits ARS French regional health agency Asip Santé French agency for shared healthcare information systems ATIH French technical agency for hospital information AVS Home assistance CARSAT French retirement and occupational health insurance fund CASF French Social and Family Services Code CCAS Local social welfare centre CLIC Local information and coordination centres CLIN Nosocomial infection control committee CLUD The diet and nutrition connection committee CME Medical establishment commission CNAMTS French national employee sickness insurance fund CNAV French national old-age insurance fund CNIL French data protection authority CNSA French national welfare autonomy fund CODERPA Departmental committee for retired and elderly person COPD Chronic Obstructive Pulmonary Disease CPAM French local sickness insurance fund CPAP Continuous positive airway pressure CPD Continuing professional development CPOM Multi-year objectives and means contract CPS Healthcare professionals’ card CRH Hospitalisation record DC Domiciliary care DGCS The directorate-general of social cohesion DGOS The directorate-general of healthcare organisation DGS The directorate general of health DREES The research, evaluation and statistical studies department DSS The social security department DSSIS The delegation for health information systems strategy EHPAD Residential care establishment for the dependent elderly EMR Electronic medical record ETP Patient treatment education FFMPS French federation of healthcare homes and centres HAD Home hospitalisation HAS French high health authority HCAAM French high council for the future of sickness insurance IGAS Inspectorate general of social affairs INSEE French national institute of statistics and economic studies LTI Long-term illness MAIA Homes for the autonomy and integration of Alzheimer’s disease patients MDPH Departmental Centre for the disabled NA Nursing auxiliary NPI Non-pharmacological intervention ORS French regional health monitoring centre PCP Personal care plan PLFSS Social security budget proposal PMSI Programme for the medicalization of information systems PRADO Discharge programme RM Risk Management RN Registered Nurse ROR Resources operational directory SAAD Domiciliary care service SAMU French emergency medical service SG General secretariat for social affairs ministries SMUR Mobile emergency and intensive care service SPASAD Social services for domiciliary assistance and care SSIAD Home nursing care service SSR Follow-up and rehabilitation care STAPS Sciences and techniques for physical and sporting activities T2A Activity pricing UNPS French national union of healthcare professionals USLD Long-term care unit VMS Medical summary WHO World Health Organisation 41 the heAlth And reseArch sector orgAnisAtions frAnce Agence Nationale De Sécurité des Médicaments et des Produits de Santé (ANSM, France) http://ansm.sante.fr Centre International d’Evaluation de l’Efficacité des Programmes de Prévention Santé et de Soins de Support (ICEPS, France) www.iceps.fr Direction de la Recherche, des Etudes, de l’Evaluation et des Statistiques (DREES, France) www.drees.sante.gouv.fr Haut Conseil de la Santé Publique (HCSP, France) www.hcsp.fr Haute Autorité de Santé (HAS, France) www.has-sante.fr Institut de Recherche en Santé Publique (IRESP, France) www.iresp.net Institut de Recherche et de Documentation en Economie de la Santé (IRDES, France) www.irdes.fr Institut de Veille Sanitaire (INVS, France) www.invs.sante.fr Institut National de la Recherche Médicale (INSERM, France) www.inserm.fr Institut National de la Prévention et de l’Education pour la Santé (INPES, France) www.inpes.sante.fr/default.asp Manger Bouger (France) www.mangerbouger.fr indispensABle orgAnisAtions, oUtside of frAnce Agence Européenne pour la Sécurité et la Santé au Travail (EU-OSHA, Europe) https://osha.europa.eu/fr Alliance Chronic Diseases (ACD, Europe) www.alliancechronicdiseases.org Clinical Trials (USA) http://clinicaltrials.gov 42 Cochrane (Europe) www.cochrane.org Commission Européenne DG Health and Consumers, Public Health, Santé Publique en Europe (Europe) http://ec.europa.eu/health/index_en.htm Current Controlled Trials (Europe) www.controlled-trials.com Enhancing the QUAlity and Transparency Of health Research (EQUATOR, Europe) www.equator-network.org/about-equator EurohealthNet (Europe) http://eurohealthnet.eu/phase/phase European Medicines Agency (EMA, Europe) www.ema.europa.eu/ema/index.jsp European Public Health Alliance (EPHA, Europe) www.epha.org European Platform AGE (AGE, Europe) www.age-platform.org European Society for Prevention Research (ESPR, Europe) http://euspr.org Eurostat (Europe) http://epp.eurostat.ec.europa.eu/portal/page/portal/eurostat/home Evidence Based Complementary and Alternative Medecine (Canada) www.camline.ca/about/about.html National Center for Complementary and Alternative Medicine (USA) www.nccam.nih.gov/research/clinicaltrials NIH model of behavioural intervention (USA) www.nihorbit.org/ORBIT%20Content/Workshops%20and%20Conferences.aspx?PageView=Shared Organisation de Coopération et de Développement Economiques (OCDE) www.oecd.org/fr Prevention Hub (Europe) http://preventionhub.org World Health Organization and Chronic Disease Prevention (WHO/OMS) www.who.int/topics/chronic_diseases/en World Medical Association (WMA) www.wma.net/en/10home/index.html WHO Public Health (WHO/OMS) www.euro.who.int/en/health-topics/Health-systems/public-health-services 43 the methodology Used The creation of this document was based on a process of in-depth interviews and questionnaires that report experiences and innovative practices. It does not claim to be exhaustive. The interviews and content of the texts were carried out and written quite independently. The document is based on the scientific literature and official reports on the subject. The final text was validated by the members of the Scientific Committee. An effort was made to make the writing style direct, concrete, constructive and devoid of technical jargon to facilitate reading. 44 the people consUlted (in AlphABeticAl order) Fabienne Blanchet Fabienne Blanchet is the Directress of Cespharm. She received her Doctor of Sciences degree from the Paris-Descartes University and is a Doctor of Pharmacy and member of the French national order of pharmacists. Since 1959, Cespharm’s goal has been to assist pharmacists to participate in prevention, health education and patient treatment education. In order to do this, Cespharm contributes to informing and training pharmacists in the field of public health, for example, by providing them with tools or through public health measures. Catherine Corbeau Doctor Catherine Corbeau is a public health physician. She practices at the University Hospital Centre of the city of Montpellier. She is particularly involved in the struggle for people living in the most precarious conditions to gain access to medical care. In this framework she officiates at the centre for tuberculosis control at Hôpital Arnaud de Villeneuve in Montpellier and is a member of the educational committee for the Welfare Solidarity Health diploma at the Montpellier I Faculty of Medicine. Catherine Corbeau is one of the ten personalities named by the Ministerial Health Order as representative of the International Movement, ATD Fourth World. This NGO fights for human rights with the aim of ensuring that those who are poorest can exercise their rights and advancing towards the elimination of extreme poverty. Philippe Carrier Philippe Carrier is the Director of Home Health Solutions at Philips Healthcare. Over the course of his career he developed expertise in health-related solutions, notably concerning respiratory and heart disorders and sleep apnoea. Philips Healthcare aims at «creating value throughout the entire continuum of care», from preventing diseases to screening and from diagnosis to treatment, including follow-up care and health management. The solutions developed by Philips are dedicated to hospital care (intensive care, emergency and surgical care) and to home healthcare. Jacques Desplan Doctor Jacques Desplan is the Chairman and Managing Director of the Fontalvie medical group. The Fontalvie Group, founded in Languedoc-Roussillon, uses expertise and know-how in the rehabilitation of people with chronic diseases. The company was founded in 1991. The group manages several establishments that provide support for patients with chronic diseases +on a daily basis. More than 500 employees provide their skill in three knowledge areas: Health Rehabilitation, Dietary Health and Health Optimisation. 45 Claude Dreux Professor Claude Dreux is the President of the French Pharmacists Health and Social Education Committee (Cespharm), a member of the French National Academy of Pharmacy and a member of the French National Academy of Medicine of which he is the reporter for the working group «The Preventive Healthcare Culture». Alexandre Feltz Doctor Alexandre Feltz is a general practitioner. He is also an Alderman in charge of Health at the Strasbourg City Council. He initiated the project «Sports-health on prescription», launched in November 2012 by the city of Strasbourg, in partnership with the Regional Health Agency, the Bas-Rhin Prefecture and the Alsace-Moselle local health insurance scheme, and the National Education system. This experiment, which is a first in France, enables the inhabitants of Strasbourg suffering from certain chronic diseases (obesity, diabetes and notably stabilised cardiovascular diseases) to get free prescriptions for a physical activity from their primary physician, with or instead of medicines. Claude Le Feuvre Professor Claude Le Feuvre is a university professor, a hospital practitioner and president of the French Cardiology Federation. Created in 1964, the French Cardiology Federation is a recognized public service association that has been combating heart attacks for more than 40 years. Its aim is to reduce the number of deaths and cardiovascular accidents. Its main missions are based on prevention, research financing, patient assistance and learning actions that save lives. Jean-Luc Plavis Jean-Luc Plavis is the administrator and legal referent of the Association François Aupetit. Created in 1982, the Association François Aupetit (AFA) works to improve the understanding and treatment of Inflammatory Bowel Diseases (IBD) in the hope of finding a cure one day. The Association François Aupetit works essentially to improve the way patients cope with their diseases by providing them with clear information and local assistance. In parallel, Jean-Luc Plavis is also responsible for communication and the CISS (Inter-association Health Organisation), an organisation that defends the common interests of all French healthcare system users. Gérard Raymond Gérard Raymond is the President of the AFD (French Diabetics Association). The AFD is a patients’ association serving patients and run by patients that was founded in 1938. The AFD contributes to improving the quality of life of people with or at risk for diabetes. In order to do so, it organises preventive actions, defends access to quality care, fights against all discrimination related to the disease and also provides patient-to-patient support. Jean-Jacques Robert Professor Jean-Jacques Robert is a paediatrician-diabetologist at l’Hôpital Necker-Enfants Malades. He is the President of l’Association Française d’Aide aux Jeunes Diabétiques (French Association for the Assistance of Young Diabetics). L’Association Française d’Aide aux Jeunes Diabétiques is a national management and treatment education association that unites young people with diabetes, their families and healthcare professionals. Its aim is to assist children and their friends and relatives to cope in the best possible way with diabetes, to present their interests to public and private organisations and ensure the training and education of the medical and paramedical professions in the school milieu. 46 47 Why is it important to act from the very moment when the signs of a disease appear? In other words, why take secondary preventive actions? Why attempt to minimize the complications of a chronic disease? In other words why develop tertiary preventive actions? Because we no longer have the choice. There is an explosion in the number of chronic diseases which represents a quarter of the French population today. One person out of three will be over 60 years of age in 2050. There are health inequalities and administrative sluggishness. The financial means are no longer limitless. It is time to choose. It’s not about the why anymore, but about the how - how to carry out the best possible secondary and tertiary prevention? Universities, researchers and insurance specialists have looked into the question. They interviewed men and women who have taken innovative action in the field or who are a part of these forms of prevention due to their institutional positions. This text takes their exchanges into account. It is also based on literature that is increasingly abundant on the subject. The hope is to contribute to the examination of the role that secondary and tertiary prevention should play over the next few years. It is not by any means an exhaustive list of measures taken, nor an inventory of recommendations. Grégory Ninot R4SH is a multi stakeholder platform launched by AbbVie in 2013 and supported by AbbVie to find concrete solutions to achieve improved health and quality of life for more people for a longer period of time through wise, efficient use of resources. www.recipes4healthcare.eu 48