The Public, Patients and Carers in Hodges' model

The table below indicates some of the main concepts and concerns that
surround the PUBLIC, PATIENTS and CARERS agenda presented using the four care domains of Hodges' model:

INTERPERSONAL : SCIENCES
SOCIOLOGY : POLITICAL

Well-being, mental (subjective) health, mood, hope, human spirit. Knowledge and understanding of condition. Literacies: 3Rs, ICT, social, visual, spiritual, health.... Diagnosis - prognosis. Psychological impact. Aware of info sources tolerance, personal choices & autonomy. Response to trauma, threat, loss. Belief systems. Coping strategies. Emotional memory Perception. 'Individual pain' Motivation. Responsibility Ability to work, disability, gender Individual engagement, personhood, dignity. Self-care, Purpose Personal Health Record Attitudes, beliefs

Physical (objective) health. Chronological - Pathological Age (of care subject, carers). 'Fitness'. Activity. Systems. SAFETY PROCESSES, structural flexibility. Pain thresholds. Measures (Pain genetics, scorecards). Systems, feedback, redesign, improvement. Complexity. Change. Research: Evidence-based care. NICE. Quantitative, Quality of Life, assessment, screening. Process redundancy. Decision making PEPIN: Professional Education Public Involvement UK Network Referral, care pathways, plans, time. Self-admin drugs. Expert patient. Health, care, eng. model(s) Ill-health - Health promotion Time for data collection. Curricula design, Courses, qualification. Standards vs Innovation Computer supported engagement*

Carer - family understanding of condition, diagnosis-prognosis. Genetic implications (if any). Familial genetics pain. Sense making. Meaning. Social articulation of individual +ve & -ve experiences. Generational (role) inversion. Engagement and Social inclusion: work, social mobility, homelessness, stigma, poverty. Access to info and comms technology The Engaged E-patient Population Medical Sociology. Sick-role. PRACTICE Effects of culture 'meanings'. Dependency. Religion, fatalism. Leisure. Volunteering. Social capital / capacity. Collaborative care, concordance. Socio-cultural reach. Communications. Media. Dialogue. Qualitiative research. Social change attitudes. Shared definitions and meanings: 'engagement', 'health', 'wellness'...

POLICY, Nat. - U.N., FUNDING, GLOBAL ECONOMICS. Legislation: Section 11 of the Health and Social Care Act 2001. Nat. programs: Health For All. Health & Local Social Service Auths, 3rd & Independent sectors. Choice, Equity, Equality, Access, Advocacy Services. Consultation, engagement. (PALs) LINks. Definitions: engagement continua, datasets, intelligence / reporting. Service planning and development. 'Localisation' - Center. NHS Constitution Scalability of concept: Grp - Ind. Organisational empathy ('x.org' <-> public, patient 'rapport, involvement'). Economic cost of prolonged 'patiency'. 'Patient Lead'. Compliance. Political priorities, strategy, continuity. Policy half-life. Consolidation. Governance. Expenses. Specificity of roles, social exclusion. Wellness. Disability. Human Rights. Invalidity. Re-training. Health outcomes, assessment. (Lay) Representation. Champions. Black, Minority, Ethinic groups. 'Citizen-Patient'? DoH INVOLVE1 Involve2 Retirees. NHS: 'Open All Hours' Dedicated centres: e.g., NCI3

The focus above is UK, but can be readily revised to reflect other countries.

1. INVOLVE: Promoting public involvement in NHS, public health and social care research.
2. Involve: Promoting public and patient involvement in policy making and service design.
3. NHS Centre for Involvement.

Additional links:

Patients' use of the Internet for health related matters: a study of Internet usage in 2000 and 2006
Healthy Democracy: The future of involvement in health and social care, Edward Andersson, Jonathan Tritter and Richard Wilson (Editors).
Dept. of Health, Patient and Public Involvement
Engage, Northern Ireland.
The Local Government and Public Involvement in Health Act 2007
LINks: individuals and community groups who work together to improve local services.
Our health, our care, our say: a new direction for community services.
Patient Information Advisory Group (PIAG).
National Patient Safety Agency

The SOCIOLOGICAL links page includes 'Seven Ages', 'Public, Patients, & Carers'...
The INTRAPERSONAL links page includes 'Mental Health', 'Psychology', 'Therapies'...
The POLITICAL links page includes 'Policy', 'Citizenry'...

*Several informatics schools: community, urban, social, health, nursing, gender, e-gov...