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Focus and Scope

Parameters of Participatory Medicine

 

Because the Journal of Participatory Medicine is a new journal publishing multidisciplinary articles on topics within a new, not yet defined field, we have established draft parameters that define the journal’s range of interest. We anticipate that these parameters will change somewhat as the field develops. In the meantime, the following characterize the field of participatory medicine. As a prospective author, please identify the statements that are relevant to the article you will submit for consideration for publication. Please check the statements that best match the focus of your submission.

I. People – sick and well – need to be participants in their own care. This means they choose the level and type of participation that suits their needs and abilities. To make this choice, they must:

1. Take action on behalf of their own health. This might include lifestyle changes and preventive actions.
2. Know when and how to call on professional care providers for help and advice and have access to them.
3. Know when and how to call on friends, family and other social networks for help and advice and have access to them.
4. Know when and how to find trustworthy information to inform health-related choices and have access to it.
5. Know where to find support and help to supplement their inability to meet the expectations of full participation in their care and have access to it.

II. Health professionals collaborate with patients to ensure that they have the knowledge, skills and support to make informed decisions about their care as they work together to achieve the patients’ aims. Health professionals will:

1. Encourage patients to become informed and involved participants in their care to the extent they are willing and able to do so.
2. Provide patients a clear explanation and all information and data about their own health and health care.
3. Serve as a knowledgeable resource about the tools, communities, and databases patients can use to support participation in their care.
4. Communicate with patients using approaches that minimize barriers to timely and effective action by patients.   

III. Health-related institutions (hospitals, insurance companies, pharmaceutical and device manufacturers) support people – sick and well – in becoming active, competent participants in their care, recognizing that they bring a range of skills, abilities and levels of commitment to this task, and that these attributes not only differ among individuals but also within individuals over time. There will always be those whose participation consists of delegating decisions and care to others. Health-related institutions will:

1. Maintain and enforce policies that ensure the availability of individuals’ information about their health and health care while guarding the privacy of this data.
2. Maintain and enforce policies that facilitate individuals’ full participation in their care but do not require it.
3. Accommodate diversity in literacy, culture, ability and level of functioning and support the ability of all to participate in their care.

IV. New Knowledge Creation stems from the collaboration of researchers and patients, as individuals and as groups.

1. Health professionals and patients sharing in the discussion of scientific methods, including open discussion about the level of evidence of the research.
2. Open, transparent process that demonstrates collaboration and participation in research.
3. Patients with significant interest in a topic joining together to create repositories for research, including (but not limited to) registries, tissue banks and genetic databases; demonstrating mutual respect for the contributions of the data owners and health research professionals with the tools to gain insight from those repositories. Interpretation of results and conclusions including involvement of all stakeholders.

V. Contextual Determinants. The environment in which participatory medicine is developing plays a powerful role in the expansion of participatory medicine. Articles on these topics should identify related topics in I-III above.

1. Media
2. National/state health policies
3. Professional training
4. Innovations in technology
5. Business environment
6. Secular changes/changes in social norms
7. Research methods
8. Innovations in incentives/measurement of health care (guidelines; pay for performance etc.)

Open Access Policy

This journal provides immediate open access to its content on the principle that making research freely available to the public supports a greater global exchange of knowledge.