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EPISODE 134: CURRENTS - Innovation for Health Disparities Research in Hemorrhagic Stroke

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Description

As clinicians working with patients who have sustained an acute brain injury, we are naturally focused on caring for the injury itself. Until recent years, the clinical severity of brain injury was regarded as the main driver of prognosis and outcomes. However, we are beginning to understand how non-clinical factors, including the social determinants of health (SDOH), contribute to differential risk for all brain injuries including hemorrhagic stroke, and continue to impact our patients’ recovery even after injury. In this week's episode Dr Lauren Koffman is joined by Dr Nirupama Yechoor and Dr Rachel Forman to discuss how understanding the complex interplay between clinical and social determinants of health is crucial for clinicians caring for hemorrhagic stroke survivors, not only for recovery and secondary prevention, but also to effectively counsel families on primary prevention. Lauren is also joined by Mike Foster, a member of Yale's Stroke Patient Advisory Board who talks about his experience as a stroke survivor.
You can read the Currents article at https://currents.neurocriticalcare.org/Leading-Insights/Article/innovation-for-health-disparities-research-in-hemorrhagic-stroke.
Stroke survivors or those who care for loved ones who have had a stroke can sign-up for Dr Yechoor's study at https://rally.massgeneralbrigham.org/study/strokewellbeing.

Contributors

  • Rachel Forman, MD

  • Lauren Koffman DO, MS

    Assistant Professor, Clinical Neurology, Lewis Katz School of Medicine at Temple University

  • Nirupama Yechoor

  1. 00:00:20
    Hi, and welcome back to the NCS podcast
  2. 00:00:22
    current series. This is Lauren Kaufman.
  3. 00:00:24
    I'm a neuro-intensivist at Temple
  4. 00:00:26
    University in Philadelphia, and today
  5. 00:00:27
    I'd like to welcome on the podcast
  6. 00:00:29
    authors from a recent current article,
  7. 00:00:31
    Innovation for Healthcare Disparities
  8. 00:00:33
    and Hemorrhagic Stroke. Drs. Rachel
  9. 00:00:35
    Foreman and Drs. Narupama Yeh Chor. So
  10. 00:00:39
    Dr. Rachel Foreman is a stroke
  11. 00:00:40
    neurologist at Yale, and Dr. Narupama
  12. 00:00:43
    Yeh Chor is a neuro-intensivist at MGH
  13. 00:00:46
    Brigham Women. So thank you both for
  14. 00:00:48
    joining us today. Thank you so much for
  15. 00:00:50
    having us. Yeah, thank you for the
  16. 00:00:51
    invitation. So yeah, I'm super excited
  17. 00:00:52
    to hear a little bit more about social
  18. 00:00:53
    determinants of health. You know, it's
  19. 00:00:53
    kind of a hot topic in medicine right
  20. 00:00:53
    now. Before we get into it in terms of
  21. 00:00:53
    the
  22. 00:01:04
    specific patient population, could
  23. 00:01:06
    someone just tell me a little bit about
  24. 00:01:07
    like what is social determinants of
  25. 00:01:09
    health and like how we apply it to
  26. 00:01:11
    medicine? Yes, definitely. I think
  27. 00:01:14
    it's the first important to define and
  28. 00:01:16
    really understand what social
  29. 00:01:17
    determinants So these are conditions and
  30. 00:01:20
    the environment where people are born,
  31. 00:01:22
    live, work, worship, and age that
  32. 00:01:25
    affect a wide range of health and
  33. 00:01:27
    quality of life outcomes. So some
  34. 00:01:29
    examples of this are safe housing,
  35. 00:01:32
    education, access to food and physical
  36. 00:01:34
    activity, air pollution, literacy
  37. 00:01:37
    skills, and racism and discrimination.
  38. 00:01:39
    And we typically think of health risk
  39. 00:01:42
    factors as medical comorbidities and
  40. 00:01:44
    don't really consider social
  41. 00:01:45
    determinants of health as typical risk
  42. 00:01:47
    factors So for instance, when we're
  43. 00:01:49
    talking to our patients with stroke
  44. 00:01:51
    about risk factors, a lot of times
  45. 00:01:53
    we're talking about high blood pressure,
  46. 00:01:55
    high cholesterol, and we don't
  47. 00:01:57
    typically include social determinants of
  48. 00:01:58
    health in these conversations. But
  49. 00:02:01
    we're really seeing more and more how
  50. 00:02:03
    much they are.
  51. 00:02:06
    Awesome. So now that we know a little
  52. 00:02:07
    bit about what we're thinking about,
  53. 00:02:10
    how does this specifically apply to like
  54. 00:02:12
    the patients we take care of stroke
  55. 00:02:13
    patients?
  56. 00:02:16
    So there are actually already multiple
  57. 00:02:18
    studies that are shedding light on
  58. 00:02:20
    social determinants of health that may
  59. 00:02:22
    explain some of our stroke disparities.
  60. 00:02:25
    For instance, for people living in the
  61. 00:02:27
    Southeast part of the country as
  62. 00:02:28
    demonstrated in the regards study,
  63. 00:02:31
    there was an increased risk of stroke.
  64. 00:02:33
    And one explanation for that might be
  65. 00:02:34
    that states in the Southeast have less
  66. 00:02:36
    investment in social safety nets. So
  67. 00:02:39
    for instance, government funded food
  68. 00:02:40
    assistance and less healthy dietary
  69. 00:02:43
    practices Also, social isolation,
  70. 00:02:46
    which so many of our patients with
  71. 00:02:48
    stroke have, has a four-fold increased
  72. 00:02:52
    risk of stroke in people that are over
  73. 00:02:54
    65. And one more study I wanted to just
  74. 00:02:57
    mention was a study last year published
  75. 00:02:59
    in JAMA that found that historical
  76. 00:03:01
    redlining was associated with modern-day
  77. 00:03:03
    stroke prevalence in New York City,
  78. 00:03:05
    which was independent of contemporary
  79. 00:03:07
    social determinants of health. So we're
  80. 00:03:09
    learning more and more about how these
  81. 00:03:10
    are risk factors for our patients with
  82. 00:03:12
    stroke. had no idea that all that work
  83. 00:03:15
    was being done. I thought one
  84. 00:03:18
    interesting point in your current
  85. 00:03:19
    article was talking about the
  86. 00:03:21
    differences in population level versus
  87. 00:03:23
    individual level social determinants of
  88. 00:03:25
    health data. So could you just explain
  89. 00:03:27
    that a little bit about how is it
  90. 00:03:29
    challenging to look at this on an
  91. 00:03:31
    individual level? Absolutely. So
  92. 00:03:34
    social determinants, as Rachel really
  93. 00:03:36
    nicely mentioned, sort of impact
  94. 00:03:38
    patients on all levels. So individual
  95. 00:03:41
    patients definitely have their own -
  96. 00:03:43
    face their own challenges in terms of
  97. 00:03:45
    where they live and sort of what
  98. 00:03:47
    environments they live and work and play
  99. 00:03:49
    in. However, social determinants
  100. 00:03:51
    impact large populations, as Rachel
  101. 00:03:53
    just alluded to as well. The one
  102. 00:03:55
    limitation that we've sort of noticed in
  103. 00:03:57
    our research so far is that when we look
  104. 00:03:59
    at individual level social determinants
  105. 00:04:01
    data, especially from the electronic
  106. 00:04:02
    health records, we tend to sort of pick
  107. 00:04:04
    up bomb things such as educational
  108. 00:04:06
    attainment, zip code, race, and
  109. 00:04:08
    ethnicity. But we have really limited
  110. 00:04:10
    ideas of how these actually people and
  111. 00:04:13
    their health care decision making. And
  112. 00:04:15
    so one challenge that we've noticed in
  113. 00:04:16
    individual level social determinant data
  114. 00:04:18
    is not only that it does not paint the
  115. 00:04:20
    full picture, but it also limits us in
  116. 00:04:22
    what we can actually address and change
  117. 00:04:24
    for our patients. Okay, and you also
  118. 00:04:27
    touched upon like the concept of
  119. 00:04:29
    qualitative research methodology.
  120. 00:04:32
    Really when we start to bring in the
  121. 00:04:35
    patient and the family into this process.
  122. 00:04:37
    So can you just tell us a little bit
  123. 00:04:38
    about that? I think that, oh go ahead,
  124. 00:04:42
    sorry No, go ahead. So one of the
  125. 00:04:45
    things that I think that we really need
  126. 00:04:46
    to start
  127. 00:04:48
    integrating into stroke research and
  128. 00:04:50
    outcomes research is really how our
  129. 00:04:51
    patients and families perceive health
  130. 00:04:53
    and healthcare. So one of the
  131. 00:04:56
    innovative ways that we're using in our
  132. 00:04:58
    viewer collaborative project is
  133. 00:05:00
    qualitative research methods as you
  134. 00:05:02
    mentioned. And so what this actually
  135. 00:05:04
    does is bring together patients,
  136. 00:05:06
    caregivers and stroke survivors and ask
  137. 00:05:08
    them how, what challenges they face
  138. 00:05:12
    perceive health and health care. This
  139. 00:05:15
    research is really difficult. It's
  140. 00:05:17
    really new. So we are really happy to
  141. 00:05:20
    be doing it, but it actually
  142. 00:05:21
    understands the patient's perspective.
  143. 00:05:23
    And I think it's really important to
  144. 00:05:25
    understand the gaps which they face when
  145. 00:05:27
    they think about their health care and
  146. 00:05:28
    health care decision-making. Okay,
  147. 00:05:30
    great. And I know you just mentioned
  148. 00:05:32
    it's a collaborative project and we'll
  149. 00:05:33
    talk a little bit about what each center
  150. 00:05:36
    is doing in a bit. But before we get to
  151. 00:05:38
    that, can you just tell us why you
  152. 00:05:40
    decided to focus on intracranial
  153. 00:05:41
    hemorrhage?
  154. 00:05:44
    Yes, absolutely. So one of the things
  155. 00:05:46
    that we noticed is that hemorrhage
  156. 00:05:47
    patients not only, you know, have
  157. 00:05:49
    really high mortality and morbidity,
  158. 00:05:52
    but one of the things that the research
  159. 00:05:53
    in the past two decades has shown us is
  160. 00:05:56
    that there has been absolutely no gains
  161. 00:05:58
    in secondary prevention after
  162. 00:06:00
    hemorrhagic stroke. Meaning while we
  163. 00:06:02
    have amazing new therapeutics and
  164. 00:06:03
    studies looking at acute management of
  165. 00:06:06
    intracranial hemorrhage, we have less
  166. 00:06:08
    sort of to offer our patients after the
  167. 00:06:10
    stroke happens. as an or intensivist,
  168. 00:06:13
    and it's a lot of the patient
  169. 00:06:16
    populations that I see and take care of.
  170. 00:06:19
    And so this network is sort of dedicated
  171. 00:06:21
    to focusing on an area of stroke
  172. 00:06:23
    research that I really think has been
  173. 00:06:25
    overlooked in the past decade. And how
  174. 00:06:29
    did you, I guess, come together as a
  175. 00:06:31
    group? You're from different centers
  176. 00:06:33
    across the country. When did this
  177. 00:06:35
    process start and how did you guys
  178. 00:06:36
    decide to work together? So this is a
  179. 00:06:40
    network that's really rich and diverse
  180. 00:06:42
    and has been built through the American
  181. 00:06:44
    Heart Association, called the Bure
  182. 00:06:46
    Network. And it involves Yale
  183. 00:06:48
    University, UCSF University, and MGH.
  184. 00:06:52
    And what it allows us to do is that in
  185. 00:06:54
    all three of our centers, we really see
  186. 00:06:56
    the life course of hemorrhagic stroke.
  187. 00:06:58
    So our UCSF colleagues, our pediatric
  188. 00:07:00
    stroke neurologists, and at Yale and
  189. 00:07:02
    MGH, we typically take care of adults.
  190. 00:07:05
    So this project is all funded through
  191. 00:07:08
    the American Heart Association However,
  192. 00:07:10
    we're really able to capture - pediatric
  193. 00:07:13
    patient populations all the way to our
  194. 00:07:14
    adult patient populations. So it's a
  195. 00:07:16
    really rich network and it's diverse
  196. 00:07:18
    because it spans the entire country.
  197. 00:07:21
    Okay and how often do you guys meet and
  198. 00:07:23
    how are you like targeting patients
  199. 00:07:25
    andor their family members for
  200. 00:07:26
    recruitment? Great question. So we
  201. 00:07:29
    have a monthly meeting but we also have
  202. 00:07:30
    a lot of network specific meetings where
  203. 00:07:32
    we get together in person and we're
  204. 00:07:35
    using you know we're leveraging all the
  205. 00:07:36
    technology and resources available to us.
  206. 00:07:38
    So not only are we referring you know
  207. 00:07:41
    stroke survivors to each other depending
  208. 00:07:43
    on where they live across the country
  209. 00:07:45
    but we're also you know recruiting
  210. 00:07:47
    through online resources and through
  211. 00:07:50
    stroke-specific organizations as well as
  212. 00:07:54
    just using community-based organizations
  213. 00:07:56
    in our three different centers. Awesome
  214. 00:07:58
    and could you tell us a little bit about
  215. 00:08:01
    how investigating these structural
  216. 00:08:04
    determinants can also impact recovery at
  217. 00:08:05
    the
  218. 00:08:06
    level of the health systems? Yeah
  219. 00:08:09
    exactly so you know Our last aim of this
  220. 00:08:12
    big collaborative grant that we put
  221. 00:08:14
    through was not just, you know,
  222. 00:08:15
    thinking about the patient perspectives,
  223. 00:08:16
    but really matching it to what happens
  224. 00:08:18
    at the health systems level. So while
  225. 00:08:20
    we identify areas of need from our
  226. 00:08:21
    patients and our caregivers, we're also
  227. 00:08:24
    seeing what we currently do at the
  228. 00:08:25
    health system. If we know these two
  229. 00:08:27
    things, we can sort of match, you know,
  230. 00:08:29
    what our patients are saying and what we
  231. 00:08:30
    are doing in our practice and see where
  232. 00:08:32
    the gaps really are to come up with new
  233. 00:08:34
    interventions. And this, we really
  234. 00:08:36
    wanna, we wanna do this because we
  235. 00:08:37
    think that there's a lot of systems
  236. 00:08:38
    level interventions that we can, you
  237. 00:08:40
    know, create that will really help
  238. 00:08:42
    secondary prevention and really help our
  239. 00:08:45
    patients in their recovery after a
  240. 00:08:46
    hemorrhagic stroke. Okay, and let's
  241. 00:08:50
    now kind of get a little bit more
  242. 00:08:51
    information on what each of you are
  243. 00:08:52
    doing at your institution. So Rachel,
  244. 00:08:54
    you're at Yale and you're working on the
  245. 00:08:56
    patient advisory board. So can you just
  246. 00:08:59
    like, tell us like, how was this
  247. 00:09:01
    developed? When did you start this
  248. 00:09:04
    process? Yes, thank you for asking.
  249. 00:09:06
    And I do wanna just thank Youropa Muff
  250. 00:09:08
    leading the effort to the Bureau
  251. 00:09:09
    Collaborative. project, it's been
  252. 00:09:11
    amazing to get to work with the three
  253. 00:09:13
    different centers and just learn from
  254. 00:09:15
    each other. So before we got involved
  255. 00:09:18
    with this, the Yale Patient Advisory
  256. 00:09:20
    Board was actually started last year for
  257. 00:09:22
    stroke patients who have both aschemic
  258. 00:09:25
    and hemorrhagic strokes. And the point
  259. 00:09:27
    of that is to understand the lived
  260. 00:09:30
    experience with what they go through
  261. 00:09:32
    with their recovery from stroke, and
  262. 00:09:34
    specifically how they navigate having
  263. 00:09:37
    high blood pressure and managing their
  264. 00:09:38
    blood pressure. So we talk about, you
  265. 00:09:41
    know, how do they check their blood
  266. 00:09:43
    pressure at home, the confidence they
  267. 00:09:45
    have, what they would do if their blood
  268. 00:09:46
    pressure was elevated. And you know,
  269. 00:09:49
    the ultimate goal is going to be to try
  270. 00:09:51
    to come up with a intervention for blood
  271. 00:09:54
    pressure that is desired by stroke
  272. 00:09:57
    patients and created by stroke patients.
  273. 00:10:00
    So it's been really, really empowering
  274. 00:10:03
    to get to listen to their experiences
  275. 00:10:06
    and start coming up with some ideas.
  276. 00:10:09
    Were there any unanticipated challenges
  277. 00:10:10
    along the way as you were kind of
  278. 00:10:12
    setting up these meetings? Yes, great
  279. 00:10:15
    question. The tech challenge has been
  280. 00:10:18
    the biggest challenge for us. So, a
  281. 00:10:21
    handful of patients have been really
  282. 00:10:23
    lucky to be able to just get onto Zoom
  283. 00:10:25
    and participate pretty easily with us.
  284. 00:10:28
    But there are a handful of patients that
  285. 00:10:30
    are not able to get on Zoom. We have a
  286. 00:10:32
    guy who's living in his mom's garage,
  287. 00:10:35
    for instance, who can't get on every
  288. 00:10:38
    time and we have to include patients
  289. 00:10:41
    like him and another patient of mine, a
  290. 00:10:44
    39-year-old black woman, who's, you
  291. 00:10:46
    know, Hammy Pleijic from a stroke and
  292. 00:10:48
    is relying on her 14-year-old son to
  293. 00:10:50
    help her on the house. And she has a
  294. 00:10:52
    hard time getting on the Zoom meetings.
  295. 00:10:55
    So again, we don't want to leave
  296. 00:10:56
    patients like her and the other
  297. 00:10:58
    gentlemen out. We need to hear
  298. 00:11:00
    everyone's story to be able to help
  299. 00:11:03
    everyone who's had a stroke. And the
  300. 00:11:06
    way we've kind of navigated this We've
  301. 00:11:08
    just had. one-on-one phone interviews
  302. 00:11:10
    to try to understand their experience as
  303. 00:11:12
    well. Is there any like particular
  304. 00:11:15
    story or something you learned from
  305. 00:11:17
    talking with these patients that really
  306. 00:11:19
    resonates with you that you'd like to
  307. 00:11:20
    share? Yeah, you know it's people are
  308. 00:11:24
    really willing to talk and share their
  309. 00:11:26
    story if you're willing to listen from a
  310. 00:11:29
    place of just genuine curiosity and
  311. 00:11:31
    wanting to understand what they're going
  312. 00:11:33
    through There was a woman, the same
  313. 00:11:36
    woman actually, a 39-year-old. You
  314. 00:11:38
    know, she wasn't coming to any of her
  315. 00:11:40
    follow-up appointments. People had been
  316. 00:11:42
    calling her every week to try to get her
  317. 00:11:44
    to come and do her therapies and show up
  318. 00:11:48
    to her appointments and she just wasn't
  319. 00:11:49
    coming. And just from having a
  320. 00:11:51
    conversation with her for 10 to 15
  321. 00:11:53
    minutes, I, you know, she explained
  322. 00:11:56
    that she just doesn't trust any
  323. 00:11:57
    providers, doesn't want to come. She
  324. 00:12:00
    feels very confident taking care of
  325. 00:12:01
    herself and her blood pressure on her
  326. 00:12:03
    own. And I think just being able to
  327. 00:12:06
    understand that about her. And if
  328. 00:12:08
    anyone had really kind of taken the time
  329. 00:12:10
    to just learn that about her, we could
  330. 00:12:12
    have approached this in a very different
  331. 00:12:13
    way and helped her on the level that she
  332. 00:12:16
    needed. So I think just really coming
  333. 00:12:19
    at it from, you know, judgment-free,
  334. 00:12:22
    genuine place of curiosity, wanting to
  335. 00:12:24
    understand their experience and then
  336. 00:12:26
    helping them on the level that they need
  337. 00:12:28
    help.
  338. 00:12:30
    Okay, Rachel, why don't you introduce
  339. 00:12:33
    one of the board members to us and we
  340. 00:12:35
    can get to hear a little bit more about
  341. 00:12:36
    their perspective. Great, thank you so
  342. 00:12:39
    much. So I have the immense pleasure of
  343. 00:12:41
    introducing Mike Foster today who is a
  344. 00:12:45
    member of our Stroke Patient Advisory
  345. 00:12:47
    Board at Yale and Mike is also kind
  346. 00:12:49
    enough to volunteer his time being part
  347. 00:12:52
    of the viewer collaborative project as
  348. 00:12:55
    well and has also has joined us at a
  349. 00:12:58
    stroke net meeting Um, so he is a
  350. 00:13:01
    stroke survivor who has been a champion,
  351. 00:13:03
    um, for advocating for other stroke
  352. 00:13:05
    survivors, and we're really grateful
  353. 00:13:07
    that he's partnered with us. Thanks for
  354. 00:13:10
    joining us, Mike. Yes, it's my
  355. 00:13:13
    pleasure and thank for the glowing
  356. 00:13:16
    introduction. So why don't you just
  357. 00:13:18
    tell us a little bit about what made you
  358. 00:13:20
    want to get involved in this process?
  359. 00:13:22
    Well, as Rachel indicated, my stroke
  360. 00:13:27
    and what I've been through in my journey
  361. 00:13:31
    has led me to have a number of
  362. 00:13:33
    opportunities to talk about what I went
  363. 00:13:37
    through with others and work in terms of
  364. 00:13:42
    educating stroke survivors
  365. 00:13:46
    Again, talking about my experience,
  366. 00:13:48
    but also talking about opportunities
  367. 00:13:51
    that are out there to get involved in
  368. 00:13:54
    stroke survival
  369. 00:13:57
    and various educational opportunities.
  370. 00:14:01
    And how soon after your stroke did you
  371. 00:14:03
    start working on us?
  372. 00:14:06
    Well, I would say my experience with
  373. 00:14:09
    Rachel and other stroke survivor groups
  374. 00:14:13
    has really only been about a year. So a
  375. 00:14:17
    year and a half call it. So I would say,
  376. 00:14:20
    I mean, my stroke happened four years
  377. 00:14:22
    ago. So two and a half years into it.
  378. 00:14:26
    And how did you learn about this
  379. 00:14:28
    opportunity?
  380. 00:14:31
    Good question. I first got involved
  381. 00:14:34
    with Gaylord Health, a Gaylord Health
  382. 00:14:39
    Services, suppose it's called. And so
  383. 00:14:41
    that's a big rehab hospital in the New
  384. 00:14:44
    Haven area. And from them, I learned
  385. 00:14:48
    about various groups like the New Haven
  386. 00:14:56
    Stroke Support Group and through the New
  387. 00:14:58
    Havens for a. Stroke Support Group,
  388. 00:15:02
    I've learned about Rachel and a couple
  389. 00:15:04
    of other
  390. 00:15:07
    groups that I got involved with over
  391. 00:15:09
    time. And Rachel's
  392. 00:15:13
    groups, various groups, have been
  393. 00:15:16
    incredible
  394. 00:15:18
    and incredible resource for me, but
  395. 00:15:21
    also an incredible opportunity for me to
  396. 00:15:24
    speak to others.
  397. 00:15:27
    Like stroke net, for example That was a
  398. 00:15:29
    wonderful opportunity. And you
  399. 00:15:32
    mentioned it being incredible. Can you
  400. 00:15:34
    maybe describe what's meaningful about
  401. 00:15:37
    this for you? Well, let's talk about
  402. 00:15:41
    stroke net. Talking to doctors, I mean,
  403. 00:15:45
    I was kind of blown away at the
  404. 00:15:52
    level of education in one room I'm
  405. 00:15:58
    hearing what's. they were doing and the
  406. 00:16:00
    research that they were doing and how it
  407. 00:16:03
    did or did not apply to me, but how it
  408. 00:16:06
    could apply to so many others and what
  409. 00:16:09
    you can do to help them
  410. 00:16:13
    facilitate grants. It just opened up my
  411. 00:16:17
    eyes to all the kinds of things that
  412. 00:16:20
    I've gone through as a stroke survivor
  413. 00:16:28
    and how it can either help somebody with
  414. 00:16:28
    years and years of education and writing
  415. 00:16:32
    grants and what you can do to help them
  416. 00:16:34
    understand how better to do that and how
  417. 00:16:37
    better to reach out to stroke survivors
  418. 00:16:40
    or having a conversation with the stroke
  419. 00:16:43
    survivor that has concerns about
  420. 00:16:52
    their next step or where they are in
  421. 00:16:56
    their journey.
  422. 00:16:59
    I was talking to a woman. I worked with
  423. 00:17:02
    the neurologist and the PT and OT people
  424. 00:17:09
    out of Newmont's health, which is down
  425. 00:17:11
    in Norwalk, Connecticut, different
  426. 00:17:13
    hospital group. But there was a patient
  427. 00:17:16
    there that was a stroke survivor, but
  428. 00:17:20
    she didn't drive.
  429. 00:17:23
    And the occupational therapist gave her
  430. 00:17:27
    my name because she knew that I was
  431. 00:17:29
    driving. Now, I had a very different
  432. 00:17:32
    kind of stroke than she had. Mine was a
  433. 00:17:34
    hemorrhagic stroke. First was this game
  434. 00:17:37
    of stroke, but she was very, very,
  435. 00:17:41
    very concerned about driving. And, you
  436. 00:17:45
    know, is that gonna impact people that
  437. 00:17:48
    are on the road? Should she have
  438. 00:17:51
    another stroke? You know, she was very
  439. 00:17:54
    nervous about it And I was able to
  440. 00:17:56
    articulate to her. what I went through
  441. 00:18:00
    and what my thought process was, what I
  442. 00:18:04
    was learning, how to drive and what I
  443. 00:18:06
    went through to get certified, to drive
  444. 00:18:08
    and how I got educated to drive and
  445. 00:18:12
    driving left-handed, left-footed,
  446. 00:18:14
    everything's on the left-hand side.
  447. 00:18:18
    And despite all of that, she still does
  448. 00:18:22
    not drive. But it gave me the
  449. 00:18:25
    opportunity to understand what were the
  450. 00:18:29
    issues that she had to deal with and at
  451. 00:18:32
    least I could articulate what I went
  452. 00:18:35
    through. And it didn't help her to take
  453. 00:18:39
    the next step, but at least it gave me
  454. 00:18:41
    the opportunity to speak to somebody and
  455. 00:18:44
    at least impart upon them my experience.
  456. 00:18:49
    And this is the type of thing. Well,
  457. 00:18:51
    this is the type of thing that I get out
  458. 00:18:53
    of working with Rachel in the various
  459. 00:18:55
    groups. because you're talking with
  460. 00:18:58
    other survivors and you're learning from
  461. 00:19:00
    them and hopefully they're learning from
  462. 00:19:01
    you. Yeah, I hadn't even thought about
  463. 00:19:04
    that whole other aspect of sharing your
  464. 00:19:06
    experience and challenges and kind of
  465. 00:19:08
    just getting back to normal life.
  466. 00:19:11
    Absolutely. Like one of the things I do
  467. 00:19:15
    is I write a recumbent bike and it's
  468. 00:19:19
    been retrofit. Again, everything is on
  469. 00:19:22
    the left-hand side that breaks the
  470. 00:19:24
    electronics, everything.
  471. 00:19:27
    And I worked with a group up in Rhode
  472. 00:19:29
    Island and they helped me get into it
  473. 00:19:32
    and I got the bike fit for me and it was
  474. 00:19:36
    a process. But that's just another
  475. 00:19:40
    thing that you go through in terms of
  476. 00:19:43
    your learning. Now an interesting story
  477. 00:19:46
    I helped bore you with this because it's
  478. 00:19:48
    germane to what we're talking about sort
  479. 00:19:50
    of. I'm going to Sarasota Memorial down
  480. 00:19:53
    here for physical therapy and
  481. 00:19:55
    occupational therapy. And as I was
  482. 00:19:58
    entering the hospital, there's a guy
  483. 00:20:01
    sitting in a wheelchair and he sees me
  484. 00:20:04
    ride up on my trike. And I
  485. 00:20:10
    got up, I got off it, I locked it up,
  486. 00:20:12
    walked over and as I'm walking in, he
  487. 00:20:14
    said, that looks pretty cool. And I
  488. 00:20:17
    explained to him where I got it, you
  489. 00:20:20
    know, and I asked him, I said, are
  490. 00:20:22
    you able to, are you ambulatory? Can
  491. 00:20:24
    you walk? He said, yeah, I can, I'm
  492. 00:20:27
    in a wheelchair simply because I'm
  493. 00:20:29
    coming out of the hospital, but I was
  494. 00:20:31
    shot 19 times. And he was obviously
  495. 00:20:40
    going to tremendous amounts of therapy
  496. 00:20:42
    to get back to where he could walk. He
  497. 00:20:44
    said, I can't use my right arm though.
  498. 00:20:48
    And I, or my left arm rather. And I
  499. 00:20:50
    said, well, that, don't worry about
  500. 00:20:51
    that If you can pedal a tripe, a
  501. 00:20:54
    recumbent bike, and you can steer with
  502. 00:20:57
    one hand, they can put all the
  503. 00:20:59
    mechanics on the right-hand side for you,
  504. 00:21:01
    so all the braking and everything else
  505. 00:21:03
    that needs to be there for you is
  506. 00:21:05
    available on the right-hand side. And
  507. 00:21:08
    he was so excited, I mean, the guy was
  508. 00:21:10
    beaming. And I was so excited that he
  509. 00:21:14
    was beaming at learning that something
  510. 00:21:17
    like this is available to him.
  511. 00:21:20
    And I went upstairs and I found out who
  512. 00:21:23
    his physical therapist was And I had him
  513. 00:21:26
    brought into my session and I said,
  514. 00:21:28
    listen, this guy's name is, I forgot
  515. 00:21:31
    what it was, but I know he's a patient
  516. 00:21:34
    of yours. And I explained the story of
  517. 00:21:38
    his involvement with or his engaging me
  518. 00:21:42
    downstairs. And I went through the
  519. 00:21:44
    whole thing and I said, here's why I
  520. 00:21:46
    bought the bike. They can put you in
  521. 00:21:48
    touch with somebody down here in Florida.
  522. 00:21:50
    You can help him figure out how to buy
  523. 00:21:53
    the bike. because there's tremendous
  524. 00:21:55
    resources available. And I mean, he
  525. 00:21:59
    could virtually get the bite for free.
  526. 00:22:02
    And if you could get him into it and
  527. 00:22:04
    it's a way for him to exercise, it's
  528. 00:22:06
    gotta be nothing but positive. So they
  529. 00:22:09
    were very excited about it. I was able
  530. 00:22:11
    to impart that tidbit of knowledge to
  531. 00:22:14
    them and hopefully help him because what
  532. 00:22:19
    that guy's going through, it's
  533. 00:22:20
    certainly not stroke related, but man,
  534. 00:22:23
    he's come so far in his own physical
  535. 00:22:27
    journey that it was kind of exciting for
  536. 00:22:29
    me. Anyway, I've gotten way off track,
  537. 00:22:33
    sorry. No, I mean, I appreciate
  538. 00:22:34
    hearing these stories because I'm taking
  539. 00:22:36
    care of people in the hospital and these
  540. 00:22:38
    are honestly things that I don't
  541. 00:22:40
    necessarily think about as they
  542. 00:22:41
    transition out of the hospital and back
  543. 00:22:43
    into life. Rachel, is there anything
  544. 00:22:45
    else you wanted to ask Mike
  545. 00:22:49
    I did want to comment that I do really
  546. 00:22:52
    appreciate the back and forth between
  547. 00:22:54
    the stroke survivors on the group and on
  548. 00:22:57
    the meeting. And, you know, Mike also
  549. 00:23:00
    is an avid golfer, which she hasn't
  550. 00:23:02
    shared yet, but he has taught himself
  551. 00:23:06
    how to golf again with using really one
  552. 00:23:09
    side of his body. I'll let him share
  553. 00:23:11
    his handicap score on his own. But he
  554. 00:23:15
    has been able to, he is part of a group
  555. 00:23:19
    of golfers who've had strokes and stroke
  556. 00:23:21
    survivors, and it's been really nice
  557. 00:23:23
    for some of my other patients, even in
  558. 00:23:25
    clinic, for me to share that resource
  559. 00:23:27
    that Mike taught me about, with people
  560. 00:23:30
    that are really, you know, depressed
  561. 00:23:31
    that they can't do the sport they love
  562. 00:23:33
    anymore. So I think, you know, even
  563. 00:23:36
    if the really intention of these stroke
  564. 00:23:39
    advisory boards is to progress research
  565. 00:23:42
    and learn about, you know, different
  566. 00:23:43
    barriers to blood pressure, for
  567. 00:23:45
    instance, the other effect. and it's
  568. 00:23:48
    really beautiful as a provider is to
  569. 00:23:50
    watch these different patients
  570. 00:23:52
    communicating with each other and
  571. 00:23:53
    supporting each other.
  572. 00:23:57
    It's been fun, actually. Your group
  573. 00:24:00
    has enlightened me. And I'll say his
  574. 00:24:04
    name is Mike and I'm not his last name,
  575. 00:24:06
    but Mike was so interested in golf and
  576. 00:24:09
    he couldn't figure out how to get into
  577. 00:24:11
    this group. So I hope that I've been
  578. 00:24:14
    able to put him in touch with the right
  579. 00:24:15
    people that will help him facilitate
  580. 00:24:18
    that. Definitely. Yeah, he's great.
  581. 00:24:22
    Thank you so much, Mike, for joining
  582. 00:24:24
    us today. Is there any other last few
  583. 00:24:26
    words you want to share with people? I
  584. 00:24:29
    would just suggest that if you've had a
  585. 00:24:31
    stroke and
  586. 00:24:33
    you need that support, oftentimes it's
  587. 00:24:36
    difficult to get into a stroke group or
  588. 00:24:39
    at least I've found it difficult to get
  589. 00:24:41
    into a stroke group of people that have
  590. 00:24:46
    a very common. type of stroke as I had,
  591. 00:24:50
    or what I'm trying to say is, it's
  592. 00:24:52
    difficult to get into a stroke group
  593. 00:24:54
    where you've got a lot in common with
  594. 00:24:58
    the people that you're in the stroke
  595. 00:25:00
    group with. A lot of times because the
  596. 00:25:02
    schema stroke is about 80 of strokes
  597. 00:25:05
    that are had, most strokes you get into
  598. 00:25:09
    are people that have had an schema
  599. 00:25:12
    stroke. Occasionally, there will be
  600. 00:25:15
    one or two people that have had
  601. 00:25:17
    hemorrhagic strokes.
  602. 00:25:20
    And that's about what it works out to be.
  603. 00:25:22
    You know, if you've got 10 people in a
  604. 00:25:24
    group, 20 of them have had hemorrhagic
  605. 00:25:28
    strokes. So what they've gone through
  606. 00:25:31
    is a little bit different than what I
  607. 00:25:33
    went through.
  608. 00:25:36
    You know, working with a group of
  609. 00:25:37
    people that had hemorrhagic strokes is a
  610. 00:25:42
    great opportunity 'cause you can impart
  611. 00:25:44
    your experience and they will impart
  612. 00:25:46
    their experience. And again, it's a
  613. 00:25:49
    give and take,
  614. 00:25:52
    and hopefully everybody learns from it.
  615. 00:25:54
    And that's what I would encourage people
  616. 00:25:56
    to do, is to get involved in a stroke
  617. 00:25:59
    support group so that you can share that
  618. 00:26:02
    experience.
  619. 00:26:04
    Thank you again so much. And thanks,
  620. 00:26:06
    Rachel, for inviting Mike to chat with
  621. 00:26:08
    us. Thanks very much for my, I really
  622. 00:26:12
    appreciate being involved. Thanks,
  623. 00:26:14
    thanks for sharing that with us And
  624. 00:26:16
    Neurupan, by your kind of taking things
  625. 00:26:18
    from a different perspective, really
  626. 00:26:20
    working on like taking stock of who the
  627. 00:26:23
    stakeholders are and trying to better
  628. 00:26:25
    understand our practices and what we
  629. 00:26:27
    need to intervene on. So could you just
  630. 00:26:30
    share a little bit about what your
  631. 00:26:31
    project is? Yes, absolutely. So as I
  632. 00:26:34
    mentioned before, a part of this study
  633. 00:26:37
    is also looking at how we as providers
  634. 00:26:39
    communicate with our patients. And so
  635. 00:26:41
    we're sort of tackling this in a
  636. 00:26:42
    two-pronged approach by getting the
  637. 00:26:43
    patients their perspectives, but also
  638. 00:26:45
    seeing what providers and how providers
  639. 00:26:47
    communicate. And so in the public
  640. 00:26:49
    health, there's a term for this called
  641. 00:26:50
    organizational health literacy. And
  642. 00:26:53
    it's how sort of we make it easy for
  643. 00:26:54
    patients to access, find, understand,
  644. 00:26:57
    and act upon health information. And so
  645. 00:27:00
    what this project is really focused on
  646. 00:27:02
    is looking at the neuro ICU at MGH and
  647. 00:27:04
    seeing how what the standards of
  648. 00:27:06
    practice are. I think once we sort of
  649. 00:27:08
    compile them, we can start to identify
  650. 00:27:10
    where we can improve things. And so
  651. 00:27:11
    we've started doing that already. So
  652. 00:27:13
    the beginning of this project was to
  653. 00:27:16
    bring together key stakeholders in the
  654. 00:27:17
    ICU, all the way from nursing
  655. 00:27:19
    administration and medical
  656. 00:27:20
    administration, bedside nursing,
  657. 00:27:22
    advanced practice providers, residents,
  658. 00:27:24
    fellows, and attendings as well. And
  659. 00:27:26
    to see how people sort of view
  660. 00:27:27
    communication in the neuro ICU. And
  661. 00:27:29
    after we've done that, one of the
  662. 00:27:31
    things that we identified was that we do
  663. 00:27:32
    not provide different formats of
  664. 00:27:34
    education for our patients and their
  665. 00:27:36
    families. It's almost all in verbal
  666. 00:27:38
    communication. And so we've undertaken
  667. 00:27:40
    a project to actually come up with a
  668. 00:27:42
    physical model specifically for a
  669. 00:27:44
    tracheostomy. And to see if we can give
  670. 00:27:47
    some adaptive communication in the form
  671. 00:27:48
    of video explanations, as well as
  672. 00:27:50
    written explanations, to improve this
  673. 00:27:52
    really large gap that we've identified
  674. 00:27:54
    in our critical care population. So
  675. 00:27:57
    we're just about to implement our
  676. 00:27:58
    intervention and we're really excited
  677. 00:28:01
    about it. And I think that it will be
  678. 00:28:02
    the way that we're gonna sort of measure
  679. 00:28:04
    what success looks like in this project
  680. 00:28:06
    is not just by healthcare utilization
  681. 00:28:09
    outcomes, but we're also gonna see how
  682. 00:28:10
    providers and patients like the
  683. 00:28:12
    intervention, see what it has helped
  684. 00:28:14
    with. Awesome, do you have an idea
  685. 00:28:16
    when you might have some results on that
  686. 00:28:18
    that you'll be able to share with us?
  687. 00:28:19
    Yeah, I would love to, I think by like
  688. 00:28:22
    early summer is what we're really hoping
  689. 00:28:24
    for. The intervention is gonna go for a
  690. 00:28:26
    couple of months and we've just like
  691. 00:28:28
    deployed like our pre-intervention
  692. 00:28:30
    survey, just understanding what even
  693. 00:28:31
    people think about communication in the
  694. 00:28:33
    ICU is a really like unknown gap, I
  695. 00:28:35
    think. So we're really excited about
  696. 00:28:38
    the project and we'll be super excited
  697. 00:28:39
    to share our whistle. Awesome, so I
  698. 00:28:43
    know you guys both do a lot research,
  699. 00:28:45
    you have funding, it's very
  700. 00:28:47
    collaborative. But for those of us that
  701. 00:28:48
    are like clinicians in the neuro ICU,
  702. 00:28:51
    what advice do you have for us in terms
  703. 00:28:53
    of how we can really include social
  704. 00:28:55
    determinants of help when we're taking
  705. 00:28:57
    care of these patients? I think that's
  706. 00:28:59
    a great question. And knowing that when
  707. 00:29:02
    a patient comes to us in the ICU,
  708. 00:29:04
    they've been through so much in that one
  709. 00:29:06
    day, but really that their life story
  710. 00:29:08
    starts along ago. And there's so many
  711. 00:29:10
    things that impact people's health that
  712. 00:29:12
    happen before they end up in the near
  713. 00:29:13
    ICU. And while we can capture some of
  714. 00:29:15
    those metrics, with our EHR data, I
  715. 00:29:18
    think the really first place to start is
  716. 00:29:20
    just asking patients and families about
  717. 00:29:23
    their diagnosis, about their journey,
  718. 00:29:25
    and about their perceptions and recovery.
  719. 00:29:27
    So I think like the really, the basics
  720. 00:29:30
    for anybody to kind of get involved in
  721. 00:29:31
    this research is just have more open
  722. 00:29:33
    conversations with your patients and
  723. 00:29:34
    your family members. Yeah, I wanna add
  724. 00:29:38
    to that. I mean, this actually came up
  725. 00:29:39
    at our advisory board meeting earlier
  726. 00:29:42
    this week and. A lot of people
  727. 00:29:44
    mentioned that they just don't remember
  728. 00:29:46
    anything about being in a hospital and
  729. 00:29:49
    really the hope that they would involve
  730. 00:29:51
    providers will involve care partners,
  731. 00:29:54
    family members, friends, just to help
  732. 00:29:57
    that extra layer of support. Okay, and
  733. 00:30:00
    for anyone that's interested in
  734. 00:30:02
    participating in what you currently have
  735. 00:30:06
    been working on, how can people do that?
  736. 00:30:07
    How should they reach out to you?
  737. 00:30:12
    So one of the ways that, you know, we
  738. 00:30:13
    have been advertising art for our study
  739. 00:30:15
    is actually online. So I'll be happy to
  740. 00:30:17
    include the link that we provide more
  741. 00:30:19
    information about our study. We're
  742. 00:30:20
    inviting, you know, stroke survivors
  743. 00:30:22
    and caregivers to kind of come and
  744. 00:30:24
    participate. I think if you're a
  745. 00:30:26
    clinician or if you're a healthcare
  746. 00:30:27
    worker and want to get involved, we'd
  747. 00:30:29
    be happy to sort of give demonstrations
  748. 00:30:30
    about this idea of organizational health
  749. 00:30:32
    literacy I think it's really prevalent
  750. 00:30:34
    in primary care and people are sort of,
  751. 00:30:36
    you know, singing its praises in the
  752. 00:30:39
    work that it's done in better
  753. 00:30:40
    communication practices with patients
  754. 00:30:42
    and families and I'll be happy to sort
  755. 00:30:43
    of you in touch with resources and give
  756. 00:30:46
    more information on that practice.
  757. 00:30:49
    We're also able to enroll remotely for
  758. 00:30:52
    our qualitative post stroke or post-ICH
  759. 00:30:56
    well-being and Narupa may you have
  760. 00:30:59
    someone from out of state, right? Yes,
  761. 00:31:02
    we are actually recruiting from all
  762. 00:31:03
    across the country and anyone can join.
  763. 00:31:05
    So one of the unique features of the
  764. 00:31:07
    studies design is that all of our
  765. 00:31:09
    sessions are held via Zoom and a really
  766. 00:31:11
    big part of this is also dissemination
  767. 00:31:13
    of what the study results show. So
  768. 00:31:15
    we're working on building a website so
  769. 00:31:16
    our participants of the past and future
  770. 00:31:18
    participants can see kind of what their
  771. 00:31:20
    contributions lead to. Oh, so really
  772. 00:31:23
    anyone taking care of patients with
  773. 00:31:24
    intracranial hemorrhage should like
  774. 00:31:26
    reach out because it sounds like this is
  775. 00:31:28
    something that our patients would be
  776. 00:31:30
    helpful to them to kind of be able to
  777. 00:31:32
    participate in this experience.
  778. 00:31:35
    Absolutely and I can't tell you how much
  779. 00:31:37
    positive feedback we've had from our
  780. 00:31:38
    participants about just being in a group
  781. 00:31:40
    with other people with the same lived
  782. 00:31:41
    experience. It's such a powerful
  783. 00:31:43
    motivating session. I can't just even,
  784. 00:31:48
    as a physician, I'm so deeply moved.
  785. 00:31:50
    So I would 100 encourage people to reach
  786. 00:31:53
    out. Awesome. Well, thank you guys
  787. 00:31:54
    for joining so much. Any final words
  788. 00:31:57
    you wanna share with the listeners?
  789. 00:32:00
    You know, that just brought up about,
  790. 00:32:02
    that's such a powerful thing you just
  791. 00:32:03
    mentioned in Rupuma about it motivating
  792. 00:32:06
    other stroke survivors. One of my
  793. 00:32:09
    advisory board members actually gave up
  794. 00:32:12
    smoking, which has been a lifelong
  795. 00:32:14
    struggle for her. And she really
  796. 00:32:17
    mentions how the board and having that
  797. 00:32:19
    to come to and for some reinforcement
  798. 00:32:21
    has helped her and just feel like she
  799. 00:32:23
    can open up more about her struggles.
  800. 00:32:25
    So, and then going back to like the
  801. 00:32:27
    social isolation piece, just having a
  802. 00:32:30
    platform and community for stroke
  803. 00:32:32
    survivors to talk and get to know each
  804. 00:32:34
    other. I'd really encourage people that
  805. 00:32:37
    take care of patients stroke to provide
  806. 00:32:39
    resources to their patients.
  807. 00:32:43
    Great, well, thank you both for
  808. 00:32:44
    joining. We'll make sure we include a
  809. 00:32:46
    link to the article in the show notes,
  810. 00:32:47
    as long as the link that you mentioned,
  811. 00:32:50
    Neurupama. And so to check out this out,
  812. 00:32:52
    our other currents content heads to
  813. 00:32:56
    currentsneurocriticalcareorg. As a
  814. 00:32:56
    reminder, NCS offers free CME for
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    select podcasts, listen via the NCS
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  819. 00:33:05
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