Patient empowerment in prevention and care of chronic respiratory disease

Lina BuzermanieneEFA Board Member

President, Lithuanian Council of Astma Clubs

lina.buzermaniene@efanet.orgwww.efanet.org

www.astmainfo.lt

What is it like being chronic respiratory patientWhat is it like being chronic respiratory patient

[ ] I d h d h i d b i 8 I[...] I started to cough up mucus and wheezing and being 8 I thought I was going to die. [...] I wish I had been diagnosed earlier, but I'm just happy I know now and that I can manage it.it.

http://www.experienceproject.com/groups/Have-Asthma/106

How do we understand patient ?empowerment?

• Continious education: EU‐wide structured care models with educational programes for patientsmodels with educational programes for patients 

• Equal access to treatment: the same level treatment opportunities doesn’t matter in whattreatment opportunities, doesn t matter in what place in Europe we live

• This leads to the most important: meaningful• This leads to the most important: meaningful involvement in decision making

What happens when chronic disease is diagnosed: patient behaviour

Patients ideas about their These can be thought of

illness are often organized

around five components

straight after diagnosis:

as the answers to five basic

questions about the illness

or health threat:straight after diagnosis:

• Identity

• Timeline

C

or health threat:

• What is it?

• How long will it last?

h i ?• Cause

• Consequences

• Control/ Cure

• What causes it?

• How will it/ has it affected me?

• Can it be controled/cured?

People form a mental model of the illness, which is made up of their answers to these questions. Source: Levendahl, et al.stated 1992

Experienced well educated patient /has better control of his/her disease

Experienced patientspe e ced pat e ts

• Are able to participate in treatment planning

• Recognize coming exacerbations early and in time to g g yprevent them

• Have partnership with doctors on equal level

► Better outcomes 

► Less time for management of disease is needed

► Less costs 

► Better quality of life

‘Unexperienced’ patients waste time and money if the understanding of the disease is not improved

Unexperienced patients

• Cannot describe symptoms to communicate with doctors properly

• Expect to be asked by doctor, do not talk themselves, cannot or feel unable to ask questionsq

• Do not know special terms

• Do not know about related diseases 

• They take into account only information they are able to understand• They take into account only information they are able to understand 

► Do not follow doctors advise due to missing dialogue

► Have one exacerbation after the other 

► Are missing school or working hours

► Have no concordance and compliance!p

Why patient education has to be ti i ?continious?

• Told, but not heard

d b d d• Heard, but not understood

• Understood, but not accepted

• Accepted, but not put into practice

• Put into practice but for how long?Put into practice, but for how long?

Konrad Lorenz

What is meaningful patient involvement?What is meaningful patient involvement?

• Individual level: informed involvement inIndividual level: informed involvement  in decisions  affecting their health: treatment plan choice of medicines ‐> joint decision‐plan, choice of medicines..   > joint decisionmaking

• Organisation level: patient groups involvement• Organisation level: patient groups involvement in design, implementation and evaluation of health care policy and practisehealth care policy and practise

Why patient involvement?Why patient involvement?

• Directly affected by political decisionsy y p• Chronic disease patients manage their disease every day – direct experience  

• Patient associations – collective experience• Represent an important stakeholderN t ti b t l ti ti t• Not competing, but complementing perspective to scientific sight, valuable point of view

• Understanding of practical implications ofUnderstanding of practical implications of decisions at the level of individual patient 

Why patient involvement?Why patient involvement?

• Justification of a decision for the patientJustification of a decision for the patient community and public at large

• Avoid public negative confrontation• Avoid public negative confrontation

• Get backing or at least understanding for final d i idecision

• Reach patient community in lay‐language

Best practice example: EMABest practice example: EMA

• Patient and Consumer Working Party g y

• Pharmacovigilance Working Party 

• Paediatric Committee

• Committee for Orphan Medicinal Products

• Committee for Advanced Therapies 

• Patient experts reviewing Patient Information Leaflets, European Public Asesment Reports and other documents addressed to publicp

• Ad hoq participation in Scientific Committees and Science Advisory Groups meetings

Key messagesKey messages• Patients with chronic conditions need continuous support to 

get better understanding of day to day life with the disease asget better understanding of day‐to‐day life with the disease as pre‐condition to become adherent: we expect EC to establish patient empowerment and self‐management of chronic di i it i it k l d h lth i iti tidiseases as a priority in its work plan and health care initiatives

• Understand doctors and patients as team! Mutual trustUnderstand doctors and patients as team! Mutual trust between doctor and patient is key to manage the illness: we expect from EC that all recommendations, methodologies and models take into account the actual patient self managementmodels take into account the actual patient‐self‐management activity in the treatment procedures

Key messagesKey messages

• Patients have a right of understandable information: we• Patients have a right of understandable information: we expect from Comission EU‐wide structured care models with educational programes for patients

• A new culture needed where patients are respected partners at all levels of health care and health policy clearpartners at all levels of health care and health policy: clear need for mechanisms supporting patient involvement, financial resources, capacity building and know how and access to the policy making processes and arenas 

”The most exciting thing that allergy, asthmaand COPD associations have done for patients is 

to change their public image.

It used to be that they were sufferers – borers –It used to be that they were sufferers  borers asking for attention to their attacks. Now they have changed into fighters for the freedom tohave changed into fighters for the freedom to 

breathe.”Edith Rameckers, founder member of EFA 

THANK YOU.THANK YOU.

EFA European Federation of Allergy and Airways Diseases Patients' Associations is a Partner of the Year of the Lung 

in Memory of Mariadelaide Franchiin Memory of Mariadelaide Franchi

EFA 35 Rue du Congrès35 Rue du Congrès000 Brussels, Belgiumwww.efanet.org