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Getting patients "in-the-loop": integrating diverse perspectives into intracranial research and the development of Deep Brain Stimulation (DBS) therapy. 

Ashley E. Walton (1,2), Alan Bush (1) , Matteo Vissani (1), Latane Bullock(1), Hezekiah J. Branch (1,2), Robert M. Richardson(1)

Department of Neurosurgery, Massachusetts General Hospital, Boston, MA, USA

McGovern Institute for Brain Research, Massachusetts Institute of Technology, Boston, MA, USA

Program in Speech and Hearing Bioscience and Technology, Harvard Medical School, Boston, MA, USA 

For questions please email awalton2@mgh.harvard.edu

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  • Patients who participate in intraoperative neuroscience studies as part of the implantation  of Deep Brain Stimulation (DBS) volunteer additional time and effort in the operating room,  primarily with the goal of contributing to research that will positively impact the experience  of other patients with the same disease. Their intracranial recordings provide a foundational contribution to our understanding of neurological function, how this function is impaired by disease, and how stimulation can be used to mitigate disease symptoms.

  • Furthermore, the  ability of implanted neurostimulation devices to record chronic, ambulatory intracranial activity is fast expanding and can further support the development of stimulation parameters optimized to support patient behaviors in everyday contexts.

  • The engagement of patients with multiple different perspectives in intracranial research is essential to a comprehensive understanding of the relationship between the brain, behavior and environments so that DBS therapy can be developed to provide adaptive support for what is important to patients.

 

Challenges to achieving this include differences in patients’ ability to participate in research due to disease burden, work and family life obligations, and initial access to neurosurgical care. To address these challenges, we developed multiple different components for eliciting patient input. 

GUIDING PRINCIPLES (1)

  • Developing long-term partnerships that recognize participation as labor, compensating individuals and communities for their contributions.

  • Engage in ongoing efforts to develop communication tools for sharing “technical” knowledge  in order to elicit meaningful input from patients.

  • Integrate neuroscience research with concerns of population health, where understanding the impact of structural inequalities is essential to and inseparable from the successful generation of scientific knowledge.

GOALS OF DBS PATIENT ENGAGEMENT PROGRAM

  • Support decision-making about research participation: provide clear information about the goals of our intraoperative studies and what it’s like for patients to participate as part of the DBS surgical procedure.  

  • Support appreciation of research contributions: emphasize the significance and unique nature of the intracranial data they allow us to collect.

  • Establish communication channels: create routine interactions with  patients and patient-participants to obtain feedback and input on our research processes.

PROGRAM COMPONENTS

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1. Pre-operative informational materials

Challenges

  • For basic neuroscience studies it is difficult to appropriately convey the potential impact of their participation to clinical care, where how their participation helps improve the experience of other patients is less straightforward.

  • It takes both sufficient domain knowledge and visual communication skills to create effective materials.

Successes

  • The visual materials helped distinguish the aspects of their clinical experience that were specific to research participation.

  • Patients asked many questions and wanted to better understand what the visuals meant.

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2. Visuals of brain data

Patients were given a visual of the recordings of their intracranial brain signal from their study participation. For a subset of patients, their data was visualized with respect to the experimental conditions in order to connect visuals of their brain data with the study goals.

Challenges

  • Can be complex to communicate details of data collection analysis in order to characterize patients’ contribution.

  • Creating a scientific vocabulary for describing data that is more accessible is necessary.

Successes

  • All patients we spoke to significantly valued having images of their data, and wanted to share it with others.

3. Post-operative interviews

We interviewed DBS patients who decided to participate in an intraoperative speech study (n=17) as well as patients who declined to participate (n=4). Interviews were at first conducted the morning after surgery, and later were conducted in-person before post-operative clinic visits. A subset of interviews focused on the effects of DBS on patients’ speech were conducted over Zoom and included members of the intraoperative study research team.

Challenges

  • Interview transcripts and formal qualitative analysis is essential to identifying  phenomena relevant to share with the larger scientific community but requires multiple individuals with significant time and expertise.

  • Interview tools that require internet connection in some cases is inaccessible for patients who can only access the internet at home using their smart phone.  

Successes

  • Creating a closer connection between researchers and those living with neurodegenerative disease allowed them to more effectively reflect on how their research can contribute towards addressing challenges patients face in their day-to-day experiences.

  • COVID increased comfort and availability of video conferencing tools, allowing for automatic transcription of interviews and decreasing the time investment required for collecting and analyzing interview data.

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4. Patient council

Four DBS patients who participated in an intraoperative speech study were recruited to be part of a “patient council”.

Challenges

  • Patients needs and interests with respect to research engagement vary greatly, including distance from  hospital, time available, progression of disease, and desire to learn about neuroscience. Creating opportunities for input that consider these differences requires flexibility in project goals.

  • One member expressed discomfort in seeing patients whose movement symptoms were more progressed.

Successes

  • It had a significantly positive impact on patients to be considered as having something to contribute.

  • We included neuroethicist collaborators as part of the council meeting, with the aim of providing further opportunities for patients to participate in research.

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5. Addressing disparities in access of neurosurgical care

Importantly, to better understand the lack of representation of marginalized gender and racial identities in DBS and our intracranial research studies, we are employing quantitative modeling and patient interviews for identifying what factors contribute to disparities in the access of neurosurgical care.

Work led by Hezekiah Branch is using medical record data to identify patients with an epilepsy diagnosis who meet criteria for neurosurgical interventions to identify factors that might contribute to their access to neurointervention. 

Challenges

  • The patient perspectives represented in intracranial research conducted in intra-operative settings are constrained by what individuals are initially accessing care that might result in a neurosurgical intervention.

  • One significant limitation is that underrepresented groups who have not sought care will not be included in medical record data.

In Progress

  • In order to better understand what other factors might contribute to disparities in access we are exploring ways to learn from individuals in a community setting.

FINDINGS

Role of visual materials

Visuals are useful tools for facilitating inclusive discussions where they provide a common language for eliciting input from patients and team members with diverse areas of training and expertise. 

Researcher Engagement

Systematically connecting researchers with patients will ensure that their perspectives and experiences can be effectively integrated into the research goals. 

Flexible roles for patients. 

Obtaining perspectives from a large and diverse group of patients requires defining roles and points of engagement that are flexible to individual patient needs and characteristics.

Opportunities for translational neuroethics (2)

Video conferencing and AI transcription tools allow for more rapid collection and analysis of interview data to inform research processes, and can be coupled with collaboration with neuroethicists for more in-depth qualitative analysis in order to share findings with the broader scientific community. 

Expand research outside the medical setting.

In order to understand disparities in access to neurosurgical interventions, efforts needs to extend to community settings to engage individuals that are not already interacting with the healthcare system.

REFERENCES

1

Walton, A. (November, 2021). Participatory machine learning and social justice in the personalization of neurological interventions. Poster presentation at the annual International Neuroethics Society Meeting.

Wexler, A., & Specker Sullivan, L. (2023). Translational neuroethics: A vision for a more integrated, inclusive, and impactful field. AJOB neuroscience, 14(4), 388-399.

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