PreVention oF chronic diseases

Transcription

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.»
«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.»
«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.»
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.»
«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.»
«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.
«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.»
«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.»
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
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.
«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
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.»
«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. Senior
Fellow, Berkeley Center for Health Technology, UC Berkeley
Grégory Ninot is a professor at the University of Montpellier. He heads the Epsylon laboratory, specialised in the study
of the neuro-psycho-sociological mechanisms involved in the change and maintenance of health-related behaviours
(www.lab-epsylon.fr). He co-manages a multidisciplinary interventional research platform aimed at examining the
best methods to demonstrate cost/effectiveness ratios of preventive healthcare measures and care support, iCEPS
(www.iceps.fr). He is the author of a blog on the subject (http://blogensante.fr).
36
for fUrther detAils
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37
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38
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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

PreVention oF chronic diseases

Transcription

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