Privacy and artificial intelligence: challenges for protecting health information in a new era

Background Advances in healthcare artificial intelligence (AI) are occurring rapidly and there is a growing discussion about managing its development. Many AI technologies end up owned and controlled by private entities. The nature of the implementation of AI could mean such corporations, clinics and public bodies will have a greater than typical role in obtaining, utilizing and protecting patient health information. This raises privacy issues relating to implementation and data security. Main body The first set of concerns includes access, use and control of patient data in private hands. Some recent public–private partnerships for implementing AI have resulted in poor protection of privacy. As such, there have been calls for greater systemic oversight of big data health research. Appropriate safeguards must be in place to maintain privacy and patient agency. Private custodians of data can be impacted by competing goals and should be structurally encouraged to ensure data protection and to deter alternative use thereof. Another set of concerns relates to the external risk of privacy breaches through AI-driven methods. The ability to deidentify or anonymize patient health data may be compromised or even nullified in light of new algorithms that have successfully reidentified such data. This could increase the risk to patient data under private custodianship. Conclusions We are currently in a familiar situation in which regulation and oversight risk falling behind the technologies they govern. Regulation should emphasize patient agency and consent, and should encourage increasingly sophisticated methods of data anonymization and protection.

Patient Perceived Involvement in Their Treatment is Influenced by Factors Other Than Independently Rated Clinician Communication Effectiveness

We analyzed (1) the correspondence of patient and clinician perceived patient involvement in decision making and ratings made by independent observer's independent ratings, as well as (2), factors associated with patient-perceived involvement, among patients seeking hand specialty care. During 63 visits, the patient, their hand specialist, and 2 independent observers each rated patient involvement in decision making using the 9-item shared decision-making questionnaire for patients and clinicians, and the 5-item observing patient involvement scale (OPTION-5). We also measured health literacy (Newest Vital Sign), patient and visit characteristics (gender, age, race, years of education, occupation, marital status, and family present). There was no correlation ( ρ = 0.17; P = .17) between patient (median 42, IQR 36-44.5) and clinician (38, IQR 35-43) ratings of patient involvement in decision making. Independently rated patient involvement correlated moderately with a specialist ( ρ = 0.35, P <.01), but not patient ( ρ = 0.22, P = .08) ratings. The finding that patient perception of their involvement in decision making has little or no relationship to independently rated clinician communication effectiveness and effort, suggests that other aspects of the encounter—such as empathy and trust—may merit investigation as mediators of the patient agency.

Qualitative Examination of Shared Decision-Making in Canada’s Largest Health System: More Work to be Done

Background: Shared Decision-Making (SDM) is an inclusive approach where patients and providers work in partnership to make health care decisions that are grounded in clinical best practice and align with patient preferences and values. Despite a growing recognition that SDM can lead to improved outcomes and reductions in unnecessary health investigations, tensions exist between patient agency and a historically paternalistic model of health care. As an evolving ideology, the Research Team sought to better understand the current state, challenges, and implementation opportunities of SDM practices across the health system. Methods: This study used a cross-sectional quality improvement design utilizing semistructured interviews to gather information from focus group participants. Five open-ended, qualitative questions were used to generate discussion on the perceptions of SDM and its role in clinical appropriateness in a variety of clinical contexts in our health system. A total of 12 focus groups (n = 95 participants) representative of patients and families, leaders, physicians, and frontline clinicians were engaged in the study. Results: Through a consensus-based approach, study results identified 4 recommendations based on 4 themes: Time, Communication, System Design, and Clinical Appropriateness. Conclusion: There are no easy solutions to the challenges of enabling SDM; however, success will be dependent upon recognizing the importance of patient agency, while maintaining an inclusive and continuous stakeholder engagement with both patients and providers. Implementation of the 4 recommendations at the organizational level highlighted in this study can serve as a road map for other health care institutions and will require a gradual approach to transform the general principles of SDM into tangible solutions to meet the emerging needs at both the local and system level.

Partners in Narrative: Empowering Patient–Physician Partnerships in the Electronic Health Record

Amidst the chorus of valid laments about the electronic health record (EHR) are voices calling our attention to its potential to enhance transmission of information, patient communication, and decision-making. Herein, we propose ideas which, in addition, may enhance the potential of physicians and patients to become better at storytelling through the EHR. Clinicians can partner with patients to create meaningful, personalized narratives which restore inclusivity and patient agency to the EHR.

MSK eConsent: Digitalizing the informed consent process to improve participant engagement and understanding.

2066 Background: eConsent was developed to digitize the research participant consenting experience with an educational engagement model. The eConsent platform tiers consent document content in an easy-to-navigate format, using videos, images, and access to supplementary information. We hypothesize that enhancing the consenting experience improves participant engagement and comprehension. Methods: Here we present two projects: 1) qualitative assessment of patient engagement in the eConsent process using a standardized 5-question survey sent to all patients who used it during 9 months in 2019, and 2) a report of our preliminary findings from exempt protocol, Assessing Participant Engagement and Protocol Education in the Consent Process (X19-055) that quantitatively compares paper and electronic consenting and a) assesses patient agency and b) tests comprehension of key consent elements in 2 protocols: Storage and Research Use of Human Biospecimens (06-107) and Genomic Profiling in Cancer Patients (12-245). Results: 1) 940 patients completed the qualitative experience survey (27% response). Most respondents (777; 83%) indicated that electronic consenting was very easy (371) or easy (406) to use. Only 25 (3%) said electronic consenting was somewhat difficult to use, 3 indicated it was difficult (0.3%), and 64 were neutral. Most (896; 95%) recommended electronic consenting to other MSK patients. Those who reported a 1 unit increase in technology discomfort, only reported a .48 unit increase in eConsent discomfort ( P< .001). 2)Quantitative 10-question electronic tests were sent to each patient’s portal account within 72h after consenting via paper or eConsent to protocols 06-107 and 12-245. To date, for 06-107: 18 paper consenters completed the test with a score of 76% vs 23 eConsent users who scored 80%. For 12-245: 43 paper consenters scored 69% vs 13 eConsent users scoring 80%. Scores are a surrogate marker for patient comprehension and show that 12-245 protocol participants’ average testing scores are higher when participants are consented with eConsent vs paper (P < .01). 06-107 protocol participants’ average test scores are trending toward eConsent improving patient understanding ( P= .11). We will follow this trend as our sample size increases to a total of 500 participants. Patient agency questions received favorable responses from most patients (100%-84%). Conclusions: eConsent enhances participant engagement and understanding and does not impose a digital burden on participants.