I learned from today’s film that how conversation can save a life. Later on during the discussion section, consent form became a hot topic as it supposes to help patients making better decisions. Below I would like to share some information and thoughts that might somewhat help with the discussions over consent form.
1. Information representation and exchange
1.1 Problem statement
Data largely depends on paper-based instruments, which constraints data management and information exchange. My team members, during the discussion, expressed an interest in electronic consent; but view accurate electronic capture of informed consent data as a challenge.
We need a medical coding system to define terminologies and semantic relations that are used in consent forms. This system can be something like Unified Medical Language System (UMLS, https://www.nlm.nih.gov/research/umls/). This system should be computer accessible and should be able to link to any existing medical language systems in the UMLS. This enables ‘computerized consent form’, and also electric information exchange across different settings and systems. This may simplify the process when safety experts and risk managers would want to use the consent forms to produce assessments and evaluations. Here is two use cases for instance: http://ieeexplore.ieee.org/xpl/login.jsp?tp=&arnumber=6366189&url=http%3A%2F%2Fieeexplore.ieee.org%2Fxpls%2Fabs_all.jsp%3Farnumber%3D6366189 and https://www.semanticscholar.org/paper/Development-of-a-BFO-Based-Informed-Consent-Lin-Harris/4e6062732cf49b6081322ae1ebd14dbc4ee3e841/pdf
2. Question answering
2.1 Problem statement
Consent form in the real world may have limited capacity to provide patients with information and to help them making a decision. In fact, a number of patients don’t really read through the forms. They may also have difficulties understanding each and every critical concept in the form (https://profiles.nlm.nih.gov/ps/access/XFBBGQ.pdf), which is likely a barrier for them to make a good decision. This is why we need doctors so much, just like what Kim said, ‘Consent forms never replace conversation’. But perhaps we could do something nice to make the consent form a bit more friendly to the patients.
What if the ‘consent form’ can answer patient’s questions instead of listing all the procedures the patients need to know. Question answering (https://en.wikipedia.org/wiki/Question_answering) may enable an interactive environment where patients have a chance to know more about what situation they are in before making any decision. A couple of use cases can be found in clinical settings yet there is probably not an existing case in patient consent.