Citizenship, participation and health

Health and Society, Master in Public Health,

University of Porto 19 June 2014

Guest lecturer: Cláudia de Freitas Centre for Research and Studies in Sociology

University Institute of Lisbon (ISCTE-IUL) claudia_defreitas@yahoo.com

Aims

�  origins of and rationales for public and patient participation in health

�  types of public and patient participation

�  impact of public and patient participation

�  tools to promote public and patient participation

Key concepts

�  Public and patient participation

�  Citizenship

�  Consumerist/democratic approaches

�  Participatory spaces

�  Shared decision-making

�  Patient-centred care

�  Health equity

�  Social determinants of health

Promotion of people’s health and quality of life and reduction of avoidable and unjust inequalities in health.

WHO: “attainment by all people of the highest possible level of health”.

RIGHT TO HEALTH

Right to health

Social determinants of health

�Nutritious and safe food

�Potable and safe water

�Sanitation

�Safe housing

�Transportation

�Safe working and environmental conditions

�Education and information about health

�Methods to prevent and control health problems

�Health care - access to public health and health care services - equitable distribution of health services - ethical and diversity sensitive health services - scientifically and medically appropriate health services - provision of essential drugs - participation by populations in health-related decisions at national and community level

Availability

Accessibility

Acceptability

Quality

Adapted from WHO (2013)

Respect e.g. refrain from denying or limiting access to health care services

Protect e.g. ensure that privatization does not constitute a threat to the availability,

accessibility and quality of services

Fulfil Adopt appropriate legislative, budgetary, judicial, promotional measures

(e.g. national health policy or plan covering the public and private sectors)

(WHO, 2013)

Lack of safe water

Improper facilities

Poor education

Lack of transport

Inappropriate treatment

Lack of safe shelter

Unenforced obligations

Health Inequities England

London: difference 8/9y in life expectancy between poor & wealthy neighbourhoods (Office for National Estatistics, 2010)

Social gradient Life expectancy is shorter and disease is more common among people at the bottom of the social ladder

Source: http://longerlives.phe.org.uk/

Dismantlement of public health care systems

Passivity/Opposition

150 million people globally suffer financial catastrophe as a result of health expenditure (WHO, 2013)

Collective Action -  demonstrations -  social movements -  pressure groups and political lobby -  call government to step down

Brazil’s Sistema Único de Saúde (1990)

Invited participatory spaces Client Council, NL Citizens’ Jury, UK

National Health Conference, BZ

� What is public and patient participation in health?

Participation

Involvement

Engagement

Citizen Patient

≠ mental health

Survivor

= US

Public

= UK User

= BZ, UK

= mental health

Community

= US

Client

= NL, SR

≠ BZ

Consumer

= NL, AUS

≠ BZ

Political Value-laden

Context-bound Where, How, Who?

Public and patient participation Working definition PPP consists of all the processes by which citizens can voice their opinions and/or influence decisions concerned with the formulation and implementation of health policies, health care, clinical guidelines, health-related research, health promotion initiatives, and treatment.

Professionals

Administrative staff

Managers Policy-makers Patients’

representatives Carers

Family members

Patients

1. Origins of and shifts in public and patient participation

Historial overview

People participation

Community participation

Consumer participation

Citizen participation

1990s

1980s

1970s 1950s

People participation

1950s

WWII WHO

1970s

South Development programmes

Local people

WWII (1939-1945) WHO (1948-present)

Technological developments

Centralisation of health care delivery

Involvement

Community participation

North & South Social movements Hospital councils

Primary care planning

Aggrieved communities

1970s Late 1970s

Human rights abuses (N) Spatial injustice (S)

1978

Alma Ata Declaration (WHO)

Mental health user movements

Primary care strategy Right to participation

Human rights advocates

Consumer participation

North & South Feedback mechanisms

Consumers

1980s Late1980s

Neo-liberal policies Dismantlement welfare state

Consumerist approach

Oil crisis

1979

New Public Management

Contributions

Economic recession Choice

Citizen participation

North & South Participatory governance mechanisms

Citizens

1990s Present

Participation as a key element of citizenship (Lister, 1997)

Participatory spaces

Democratic deficit

Democratic approach

Voice

Rationales for participation �  Lay expert approach Participation: means to elicit patients’ expertise about illness and health care Service users: lay experts who can contribute to improve care Emphasis: eliciting expertise

�  Consumerist approach Participation: feedback mechanism to enable service providers to know users’ needs and preferences Service users: consumers who express preferences through market choices Emphasis: enabling choice

�  Democratic approach Participation: right of citizenship that enables the devolution of power to the citizenry Service users: citizens who have the right to influence the decisions that affect their lives. Emphasis: enabling voice

2. Types of public and patient participation

Types of participation

Citizens can participate in:

�  policy-making

�  health care planning, delivery and evaluation

�  health-related research

�  clinical guideline development

�  health promotion initiatives

�  treatment

Collective participation

Individual participation

Participation in practice: Brazil Type: policy-making Part. Spaces: municipal/state/national health conferences Outcome: approval 5 pilot projects: psychiatric advanced directives (crisis plan & card)

(De Freitas, 2008; 2011)

Community

Municipal conference

State conference

National conference

Steering group

+ Frames

proposal +

Selects represen-

tative

Represen-tative

+ Presents proposal

+ Voting

Represen-tative

+ Presents proposal

+ Voting

Represen-tative

+ Presents proposal

+ Voting

IMPLEMENTATION

Participation in practice: Suriname & The Netherlands Type: health care services Participatory Spaces: client councils Outcome: implementation of a client council at the psychiatric hospital

Suriname

Client councils in the Netherlands

Composition: patients, family members, facilitator

Consultation: human resources policy, yearly budget, culturally-competent practise, food arrangements, complaint procedures

Surinamese experience

Forming a partnership with experienced partner (NL)

ê Request authorization Assembling resources

ê Public inauguration of new

client council

Participation in practice: England

Type: health care services & health promotion Participatory Spaces: Online platform Outcome: enhancing patient-centred care

England

Database on Individual Patients Experiences (DIPEx): -  Enabling people to learn from others sharing

similar conditions and experiences, and to avoid isolation

-  Enabling care to become more centred on patients’ needs

Partnership: Dipex International & University of Oxford

Video link: http://healthtalkonline.org/peoples-experiences

Participation in practice: Portugal Type: health promotion & health research Participatory Spaces: patient association Outcome: enhancing access to information & treatment

Portugal

WHO (2010) è Portugal needs to take more action on patient participation National Health Plan (2012-16) è importance of patients’ participation

Invited participatory spaces: Hospital councils (City Hall, professionals, president appointed by Minister of Health) è no involvement of patients

Community councils (City Hall, social security, IPPS, schools, hospital, trade unions, patient associations) è diffilcultties involving patients

Rare Diseases Patient Association

- gathering information - providing support - advancing research and knowledge

3. Impact of public and patient participation

Positive consequences

�  Improves the quality of health care services (Mockford et al, 2012)

�  Increases research quality and relevance (Smith et al, 2008)

�  Promotes the health and well-being of participants (De Freitas, 2011)

�  Improves the quality of treatment (Weingart et al., 2011)

Negative consequences

In the absence of a good institutional design, or when no support is provided to participants, participation can lead to:

èfeelings of devaluation and powerlessness (Atree et al., 2011)

èstress and exhaustion (Clark et al., 2004)

When participation concerns a highly stigmatized illness (e.g. mental illness), or groups of people whom the rest of society is not prepared to share power with (e.g. women in patriarchal societies), it can lead to:

èpeople’s exclusion from their communities (Sozomenou et al., 2000)

4. Tools for implementing public and patient participation

Enabling public and patient participation

Consultation Deliberation Partnership

Collective participation

Voicing opinions Influencing outcomes

Individual participation

Shared decision-making

Enabling collective participation Identify the stakeholders all people interested in a particular issue should be represented

Select the goals participation can be meant for: - analyzing a problem - planning an intervention - assessing an intervention - deciding upon an intervention

Choose the setting participatory exercises should take place in settings where people feel confortable (e.g. health care centre, school, city hall)

Select the methods methods should be selected based on the goals of participation

Enabling collective participation - Methods Analysing a problem: Role playing Acting an everyday scene where the problem is present and reflecting on it.

Participatory photography/video Identifying and documenting a problem through photographs or video Planning an intervention Action planning - identifying solutions and objectives concerning a problem; - thinking which activities are needed to accomplish them; - defining when the activities will be carried out and by whom; - defining the resources necessary for each activity; - deciding who coordinates each activity; - evaluating the feasibility of the plan

Enabling collective participation - Methods

Assessing an intervention: Focus group Answering predetermined questions about a particular intervention and expressing individual viewpoints. Writing up conclusions. Feeding back conclusions to to participants for further input and clarification. Deciding upon an intervention Public meeting Participants (selected at random or purposefully) join a group of experts who present technical information about an issue. Participants inquire the expert panel, and frame a proposal for an intervention on the basis of information obtained. Proposals are voted.

Enabling individual participation Shared decision-making process of dialogue between a healthcare professional and a patient aimed at reaching a health care decision together.

Decision-making aids: -  leaflets, -  videos -  web-based tools

Video http://healthtalkonline.org/

Literature De Freitas, C. (in press, 2014). Equidade, diversidade e participação dos cidadãos em saúde. In B. Padilla, S. Hérnadez-Plaza & E. Rodrigues (Eds) Health and citizenship: Equity on maternal-child healthcare in times of crisis, Lisbon: ISCTE-IUL. Available at: https://iscte-iul.academia.edu/CláudiadeFreitas De Freitas, C. (2011). Participation in mental health care by ethnic minority users: case studies from the Netherlands and Brazil, Utrecht: Utrecht University. Kahssay, H.M. & Oakley, P. (1999). Community involvement in health development: A review of concept and practice, Geneva: WHO. WHO (2006). Ninth futures forum on health systems governance and public participation. Copenhagen: WHO Regional Office for Europe.

Links

http://healthtalkonline.org/

http://www.dipexinternational.org

Additional Literature Atree, P., French, B., Milton, B., Povall, S., Whitehead, M. & Popay, J. (2011). The experience of community engagement for individuals: a rapid review of Evidence. Health and Social Care in the Community, 19(3), 250–260 Carapinheiro, G. (2008). A participação dos doentes na definição das políticas de saúde. In: Infarmed (ed.) Infarmed 15 anos: olhar o passado, projectar o futuro, Lisboa: Infarmed. Church, J., D. Saunders, M. Wanke, R. Pong, C. Spooner, and M. Dorgan (2002). ‘Citizen participation in health decision-making: past experience and future prospects’, Journal of Public Health Policy, 23: 12–32. Contandriopoulos, D. (2004). A sociological perspective on public participation in health care, Social Science and Medicine, 58: 321–330. Crawford, M.J., D. Rutter, C. Manley, T. Weaver, K. Bhui, N. Fulop, and P. Tyrer (2002). Systematic review of involving patients in the planning and development of health care, British Medical Journal, 325: 1263–1267. De Freitas, C. (2008). A participação e preparação prévia do usuário para situações de crise mental: a experiência holandesa do plano/cartão de crise e desafios para sua apropriação no contexto brasileiro. In E.M. Vasconcelos (Ed.) Abordagens psicossociais: Vol II: Reforma Psiquiátrica e saúde mental na ótica da cultura e das lutas populares, São Paulo: Huticec, pp. 142-170. De Freitas, C (2013). Aiming for inclusion: a case study of motivations for involvement in mental health-care governance by ethnic minority users, Health Expectations. doi: 10.1111/hex.12082

De Freitas, C., García-Ramirez, M., Aambø, A. & Buttigieg, S. (no prelo, 2014). Transforming health policies through migrant user involvement: Lessons learnt from three European countries. Psychosocial Intervention, 23(2): --

Additional Literature Dent, M., Fallon, C., Wendt, C., Vuori, J., Puhor, M., De Pietro, C. & Silva, S. (2011). Medicine and user involvement within European healthcare: a typology for European comparative research, International Journal of Clinical Practice, 65(12): 1218-1220. Elwyn, Glyn; Edwards, Adrian (2009). Shared decision-making in health care: Achieving evidence-based patient choice. Oxford University Press. . Heisler M, Bouknight RR, Hayward RA, Smith DM, Kerr EA (2002).The relative importance of physician communication, participatory decision-making, and patient understanding in diabetes self-management, J Gen Intern Med, 17 (4): 243–52. Lister, R. (1997). Citizenship: Feminist perspectives. London: MacMillan Press. Mockford, C., Staniszewska, S., Griffiths, F. & Herron-Marx, S. (2012). The impact of patient and public involvement on UK NHS health care: a systematic review, International Journal for Quality in Health Care, 24 (1): 28-38. Smith, E., Ross, F., Donovan, S., Manthorpe, J., Brearley, S., Sitizia, J. & Beresford, P. (2008. Service user involvement in nursing, midwifery and health visiting research: a review of evidnce and practice, International Journal of Nursing Studies, 45: 298-315. WHO (2013). The right to health. Fact sheet n. 323. Available at: http://www.who.int/mediacentre/factsheets/fs323/en/ Sozomenou, A., Mitchell, P., Fitzgerald, M.H., Malak, A. and Silove, D. (2000). Mental health consumer participation in a culturally diverse society, Sydney: Australian Transcultural Mental Health Work, Management Unit. Weingart SN, Zhu J, Chiappetta L, Stuver SO, Schneider EC, Epstein AM, David-Kasdan JA, Annas CL, Fowler FJ, Weissman JS (2011). Hospitalized patients' participation and its impact on quality of care and patient safety. Int J Qual Health Care, 23 (3): 269–77. WHO (World Health Organization) (1978). Declaration of Alma-Ata. International conference on primary health care, Alma-Ata, URSSR, 6-12 September 1978. Geneva: WHO. WHO (2010). WHO Evaluation of the National Health Plan of Portugal (2014-2010). Copenhagen: WHO Regional Office for Europe.