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| Notes from the __Sharing Knowledge__ conference organized by the __Da Vinchi Institute__ in Amsterdam.\\ | 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.\\ | Lecture by Jaqueline Broerse.\\ | ||
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| * how to deal with science-illiteracy among non-scientific participants. | * 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' | ||
| + | * 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 ' | ||
| + | |||
| + | ===Conclusion. === | ||
| + | |||
| + | == How do the anticipated results pan-out? == | ||
| + | |||
| + | | ^ anticipated problems | ||
| + | ^ |small impact on policy and science | a large impact due to involving patient groups | | ||
| + | ^ |little public interest | ||
| + | ^ |results are not representative | ||
| + | ^ |expensive | ||
| + | ^ |science-illiteracy problem | ||
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