Parameters of Participatory Medicine
6.18.09
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:
a. Take action on behalf of their own health. This might include
lifestyle changes and preventive actions.
b. Know when and how to call on professional care providers for
help and advice and have access to them
c. Know when and how to call on friends, family and other social
networks for help and advice and have access to them
d. Know when and how to find trustworthy information to inform
health-related choices and have access to it
e. 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:
a. Encourage patients to become informed and involved
participants in their care to the extent they are willing and able to
do so
b. Provide patients a clear explanation and all information and
data about their own health and health care.
c. Serve as a knowledgeable resource about the tools,
communities, and databases patients can use to support
participation in their care.
d. 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:
a. Maintain and enforce policies that ensure the availability of
individuals' information about their health and health care while
guarding the privacy of this data.
b. Maintain and enforce policies that facilitate individuals' full
participation in their care but do not require it
c. 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.
a. Health professionals and patients sharing in the discussion of
scientific methods, including open discussion about the level of
evidence of the research
b. Open, transparent process that demonstrates collaboration
and participation in research
c. 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.
a. Media
b. National / state health policies
c. Professional training
d. Innovations in technology
e. Business environment
f. Secular changes / changes in social norms
g. Research methods
h. Innovations in incentives / measurement of health care
(guidelines; pay for performance etc.)
