PATIENT –CENTRED CHRONIC DISEASE MANAGEMENT AND

GENDER

Susanna Palkonen, EPF Board Member

Health & Gender though life, Copenhagen, 15 July

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• Independent, non-governmental umbrella organisation set up in 2003

• VISION: High-quality, patient-centred, equitable healthcare for all patients in the EU

• MISSION: To provide a strong and united patients’ voice –> Putting patients at the centre of EU health policy

EPF About us

54 member organisations – 150 million patients with chronic conditions across the EU

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• Significant differences in how men and women are affected by chronic diseases : prevalence, degree of severity, symptoms- biological differences & gender aspects

• Gender differences not only have a direct impact on the health behaviour, exposures, social factors, but also on needs and access to care of women and men.

• Men are more likely to die, at all age, of all the causes of death recorded by Eurostat; Women live longer, are more likely to suffer illness and disability in later life

• Governments and health systems do not always recognize of address this sufficiently: health systems can also indirectly contributes to gender inequalities in health.

Gender and chronic diseases

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1.Research & Clinical trials2.Chronic disease management3.Informal carers/families4.Health literacy/ communication and

information/ empowerment5.Healthcare professional training6. Role of patient organisations

Gender and chronic diseases

Gender dimension in:

subtitle• Gender imbalance in health research both in content and process (source: ENGENDER Project, policy brief gender imbalance in health research)

- Content: slow recognition that health problems affect men and women differently, misdirected and incomplete approach to men and women’s need, and lack of recognition of interaction between gender and other social factor.

- Process: e.g. lack of disagregated data in project, gender imbalance in clinical trials, ethic committees, advisory bodies…

1. Research & Clinical trials

Women and men are different in regards to their biological make-up (sex). Gender is not related to biology; it refers to cultural issues: men and women’s different roles and responsibilities in society, their access

to and control over resources, including information, and their decision-making power.” Value + project

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• Value + : explored gender and patient involvement in EC health related projects

• Recommendations to better integrate gender perspective:

‐ Both men and women must be involved actively to generate a rich and relevant mix of approaches to health matters

‐ Meaningful participation opportunities should take account of gender differences: e.g. men and women need to be approached differently

‐ Male and female participation should be appropriate to the gender dimension of project objectives and outcomes

1. Research & Clinical trials (2)

“Health research in all areas shows that gender factors have a great influence on causes, consequences and management of diseases and ill-health.”

“Prevention, treatment, rehabilitation and care delivery often need to be adapted to the gender of the people who will use them” Value + Toolkit

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most research and clinical trials are done on men and extrapolated to women

research on the kinds of treatment that are best for women remains limited

• 2006 EMA document “ICH - Gender considerations in clinical trials” showed that women involved but less so in phase Phase I

and I-II studies. However, these are the studies in which safety, safe dosage range and side effects are determined

1. Research & Clinical trials (3)

EPF calls on the EU institutions to ensure that the revision of the clinical trial directive address this issue: beyond the question of ethics- effectiveness and safety of medicines is at stake

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Men and Women have different health behaviours- they both have unmet needs, caused by different factors

Gender may affect the provision of secondary prevention, treatment, management of a disease:

‐ Gender labelling negative consequences on diagnosis and treatment (e.g. CVD, osteoporosis)

‐ It may be affected by gender norms and stereotypes (e.g. mental health diagnosis and treatment)

‐ The EC reported that most comprehensive screening programmes are targeting women’s health (in particular sexual and reproductive) and women’s specific cancer – BUT both for men and women still wide disparities in Member States in the availability of screening programmes

‐ May affect other areas e.g. return to work

• Health systems failures: due to lack of awareness/ recognition among patients, healthcare professionals, and decision makers

2. Chronic disease management

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most people providing informal care are women (2/3 according to WHO)

Trend towards home care: potentially cost saving – key wish of patients to remain independent for as long as possible- better health outcomes.

Need for adequate support and training of carers Some existing support services, but generally informal carers do

not receive enough support and recognition• Known effect on employment- little research on quality of life

and health of carers• Recognising informal carers: counted in statistics, accounted for

in health economic representations, and taken into account when policy is made.

3. Informal Care

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• Empowerment depends upon:‐ High quality information to patients on treatment options, their disease and

other health issues – one size does not fit all‐ Health literacy: having the capacity to obtain, interpret and understand

health information; to make sound health decisions; and to navigate the health services

‐ Enabling healthcare environment: organisation of health system can be empowering or dis-empowering

• Women and men have different needs:‐ Women act as pillar in the family for health, for children, as informal carers,

and for themselves‐ Men have lower understanding of health and prevention‐ For both groups- no homogeneity- gender may be combined with other

factors that affect their health literacy(education and culture, belonging to an ethnic minority…)

4. Health literacy& empowerment

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• Need to use the right channels to provide information to men and women

• Provide patients with information they want and need• Key role of patient organisations :‐ They regularly liaise with grassroots patient communities that

they know well, thus they can help ensure that health promotion and prevention messages are effectively communicated.

‐ They can also reach out to populations with specific risk factors, or patients with particular disease, and from diverse ethnic and cultural patient groups.

EPF calls for comprehensive strategy on information to patients at EU level that encompass health literacy

4. Health literacy& empowerment

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• Gender literacy of healthcare professional is a key issue, since they have an important role to play in empowering patients to participate in shared decision making, and contribute to building a patients’ own health literacy.

• The way gender is addressed in the content of medical and health care courses influences healthcare professionals’ training and therefore their future clinical practices.

‐ HP need to be aware of how gender influences health outcomes and health seeking behaviours.

‐ They also need to be trained in communicating more effectively with patients from both gender.‐ need for further availability of sex disaggregated data‐ Continuing Professional Development

5. Health professionals’ training

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• Key role in providing user friendly information and putting in place health literacy initiatives

• Patients’ organisations can support health promotion efforts in the community through facilitating community outreach, community screening, and the development of community support.

• Given the differences in the health systems in EU Member States, patient organisations can play a highly effective role in identifying interventions that work for different patient groups in the different cultural and social contexts

• Meaningful patient involvement in clinical trials (health related research, in developing health related indicators, in health programmes and policy is essential to ensure that they reflect patients’ real needs

5. Role of patient organisations

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• Gender is a universal factor and goes across other dimension (e.g. socio-economic, religious, cultural, ethnic, categories.) – need consider gender alongside other diversity issues

• EPF has formulated recommendations on meaningful patient involvement as part of the Value + project which takes into account diversity issue- we call on Member States and EU institutions to implement them.

• Women and men should be encouraged to become equally involved in health matters that affect them

Final Thoughts

THANK YOU FOR YOUR ATTENTION!More information:www.eu-patient.euinfo@eu-patient.eu