I just found this, to me at least, interesting 2014 paper reviewing studies of tools for advance care planning.
It might help us think more generally about what tools would help in partnering. Of course, advanced care planning is just one example of patient partnering, but one that has already had some real attention.
The report, based on research conducted by the Minnesota Evidence-based Practice Center under contract to the Agency for Healthcare Research and Quality, collected available tools, and then collected appropriate assessment studies and integrated them using the International IPDAS 2005: Criteria for Judging the Quality of Patient Decision Aids.
The conclusion of the Report:
Applying the IPDAS criteria to the decision aid tools highlights the general lack of effectiveness information. An effective decision aid leads to decisions (whether made by the patient or surrogate) that are informed and consistent with the decisionmaker’s values. Few tools on the OPDAR Web site meet all effectiveness criteria. Generally available decision aids do not provide information to evaluate whether effectiveness has been assessed. For the decision aids found in the published effectiveness literature, the outcome measures are not effectiveness measures, as measured by the IPDAS, but measures of satisfaction and desire for comfort care over life-sustaining treatment. If comfort care is the choice that is consistent with the informed consumer’s values and wishes, then the tool is effective. However, some informed consumers will have value systems that lead them to choose life sustaining care.
Key informants specified a set of important criteria for assessing decision aids. The first criterion is whether the decision aids are balanced, informing but not selling particular philosophical stances or specific decisions. The second criterion is whether decision aids present narratives of people who have gone through the experiences, particularly if several voices provide different perspectives to enhance the decision aid balance. The third criterion is making core facts available to reduce the likelihood of overestimating the value of interventions and the odds of good outcomes. Finally, decision aids should present relevant facts effectively and accessibly.
Hardly a massive endorsement of the 2014 market. And, at a minimum, this assessment process seems focused on the information, rather than on supporting the varied ways that individuals work their way into decisions. The information, including on outcomes and experiences, is important, but its effective use is heavily dependent on the context and the process.
More generally, and much more interestingly to me, I think we should be exploring tools that help each member of the team bring their resources, knowledge and strengths to the process as a whole.
Moreover the advanced planning tools need to be built to make sure that each team member in the decision-making process is aware of their roles, and of their strengths and weaknesses in playing that role. See, for example, this prior post about partnering, decision-making, and mutual respect for autonomy. Those tools need to reflect the multiple human processes in which we all engage, and design can benefit from a wide variety of disciplines.
I suspect that there are many areas of partnering, including the making of short term decisions, learning from experiences, self-assessment, research partnering, etc. which would benefit from carefully thought out tools that provide a variety of ways of fostering focused and helpful communication.
Much to be done, I suspect.