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--- communication_of_science [2007-10-12 11:45] – theunkarelse
+++ communication_of_science [2007-10-12 12:42] – theunkarelse
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 Notes from the __Sharing Knowledge__ conference organized by the __Da Vinchi Institute__ in Amsterdam.\\
-== Some of this may be useful for our research into an ARG for [[groworld]], what attracts people, what problems are associated with informative games, etc. ==
+== Some of this may be useful for our research into an ARG for groworld, what attracts people, what problems are associated with informative games, etc. ==
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-==== Transaction approach to Interactive Learning. ====
+==== > Transaction approach to Interactive Learning. ====
 Lecture by Jaqueline Broerse.\\
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   * how to deal with science-illiteracy among non-scientific participants.
+== Design Research for Interactive Learning. ==
+Broerse has developed processes for interactive learning with various patient groups for eight years.\\
+Working with:
+  * diabetics.
+  * people with burns.
+  * congenital heart defects.
+  * mentally disabled.
+  * //and several others//
+=== Ingredients. ===
+To achieve a good dialog between physicians and patients:\\
+  * mutual respect.
+  * active involvement throughout the project, there was a mentally disabled person involved from day 1 in all meetings for that project.
+  * attention for diversity and plurality, many age-groups, and social groups involved.
+  * integration of different kinds of knowledge, not a debate, because then people still tend to stick to their positions.
+  * design the process as flexible as possible.
+  * facilitators are key-persons for keeping things going.
+  * don't start the dialog to early or the experts will dominate the process.
+  * Visualization is a powerful tool for communicating between different groups.
+=== Results learned: ===
+  * Patients are able to set research priorities:
+    * can prioritize topics (itching as top issue for people with burns)
+    * have attention for long term value of research.
+    * can bring new topics to research.
+  * This process clears up differences in priorities for researchers and patients.
+  * it remains difficult to address power differences between doctors and patients, but:
+    * increasing the number of patients helps.
+    * preparing patients for this helps.
+  * the facilitator is crucial.
+  * there are always issues with enthusiasm and mistrust.
+  * the dialog is seen as very gratifying for all parties.
+  * the use of peers increases impact of research results (like patient organizations)
+  * tackling scientific illiteracy by giving lessons, just makes patients more shy to share their part of the story.
+  * the dialog doesn't continue when the project ends.
+  * the medical system is not organized to work well with this new approach:
+    * scientists have to make a paradigm shift.
+    * lack of sense of urgency.
+    * fears of delay.
+    * financing dominated by scientists themselves.
+    * patients are not present in panels and boards.
+    * appraisal procedures are based on scientific data only.
+    * treating other types of knowledge such as a patients daily experience as equal to scientific knowledge can be felt as a threat to their authority by scientists.
+    * patients are not 'naive' anymore but are well informed proto-professionals, which gives them a certain mindset similar to the scientists. The real 'naive' patients that you want, are hard to find.
+== How do the anticipated results pan-out? ==
+| ^ anticipated problems              ^ results                                        ^
+^ |small impact on policy and science | a large impact due to involving patient groups |
+^ |little public interest             | a much closer network with the general public  |
+^ |results are not representative     | more implementation of research                |
+^ |expensive                          | same                                           |
+^ |science-illiteracy problem         | needs good moderation                          |