Judit Fridli:
New Challenges in the Domain of Health Care Decisions

Initial Work and Advocacy Plan
May, 2005

1. Aim of the project

The objectives of the project are to mobilize coalitions supporting legislators, civil organizations and institutional leaders in overcoming resistance to patients' autonomy and striving to develop framework favorable for patients' rights; strive to keep the principles of patitent autonomy, informed consent and non-discrimination on the health-policy agenda;

My research will target:

- to describe the situation of human rights in health care settings;
- to elaborate policy recommandations for law makers;
- to trigger policy advocacy efforts around patient rights issues;
- to use the public health program network for making professional contacts and joint advocacy

2. Identification of OSI network programs that may serve as partners and the expected benefits from the cooperation:

- build upon experiences of these programs;
- establishing information sharing mechanisms;
- consultation to identify important opportunities to cooperate and overlaps became informed about
  effective models or approaches;
- help each other in identifying partners, advocacy organizations, experts and stakeholders.

More specifically:

2.1. International Harm Reduction Development Project

The project focuses on diminishing the individual and social harms associated with drug use-particularly the risk of HIV infection-through innovative measures based on the philosophy of harm reduction.

Cooperation in researching on legal and policy environments that seem to promote or obstruct access to HIV prevention, treatment and care.

2.2. Sexual Health and Rights

Investigation of the key issues and best models to empower affected communities to become effective advocates around legal and policy concerns vis-a-vis sexual health and rights.

Draft analysis of laws, policies and practices related to sex work.

2.3. International Palliative Care Initiative

Focuses on enhancing hospice and palliative care programs in Central and Eastern Europe and the former Soviet Union. To that end, analyses and identification of essential drugs policy reform for opioids. Consulation on the development of national palliative care plans and legal regulation.

2.4. Law and Health Project

A crosscutting unit at Public Health program dedicated to strengthening civil society's capacity to effect change in the health system and influence national policy or legislation having an impact on health and to building capacity in law and health to address priority areas of public health.

Cooperation in the analyses of legal framework of the most important areas of free decision-making in health care.

2.5. Romani Health Project

Roma communities living on the margins do not have equal access to health resources and the services they can avail themselves of do not respond to their needs.

Monitoring the violation to the right of equal treatment in health care.

Joint efforts to promote romas participation in formal bodies created around goverments or goverment agencies on public health issues

3. Final outcome of the project

3.1. a research paper

How to promote the legal acceptance of the requirement of informed consent in health care: a comprehensive analysis of human rights in health care settings

        3.1.1. fundamental legal principle: right to self determination the interest of ordinary persons in
                  making significant decisions about their lives for themselves the exercise of self-
                  determination in treatment decision-making the informed consent principle

                  competency: patients should have a right to mutually responsive communication about their
                  health care needs dialogic reciprocity needs the capacity of the patient to participate in
                  such communication

        3.1.2. surrogate decision

        3.1.3. life and death issues

                  medical decision at the end of life

                  how to help dying people

        3.1.4. social control on individual decision: people with mental disorders, people with contagious

        3.1.5. dilemmas generated by new medical technologies: assisted reproduction, genetic

3.2. workshops and meetings

        3.2.1. meetings with OSI networking programs responsibles, stakeholders, network of patients
                  groups, citizen's initiatives and legal experts

        3.2.2. participation at workshops. Sex-workers training program in Lithuania , supported by OSI Sexual Health and Rights
                     Program, July 2005 World Hospice Day, organized by the Hungarian Palliative Association. The meeting is
                     targeting the National Plan on Palliative Care, October 7-8, 2005 Conference on HIV prevention and reproductive rights organized by ASTRA, a
                     coalition of reproductive health organizations from Eastern Europe and former Soviet
                     Union. The meeting seeks to bridge the gaps among service providers, advocates and
                     affected communities in the arenas of sexual and reproductive health; HIV/AIDS
                     treatment and care; harm reduction; and sex worker issues. November, 2005

3.3. 20-page policy study

Recommendations for lawmakers and governmental agencies in Hungary and elsewhere on legal refoms and identification of effective advocacy initiatives

        3.3.1. Determination of the problems in autonomous decision making what the problems are and
                  how they might best be solved so as to preserve the right to self determination principle;
        3.3.2. Identifying appropriate policy instruments;
        3.3.3. Preparing legislative and policy recommandations for political decision makers.

3.4. briefing papers:

        3.4.1. on free decision-making in health care

        3.4.2. on reproductive rights

        3.4.3. on dying with dignity

Judit Fridli

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