00:00Really happy that you all joined me here today because I've really been thinking about this
00:09topic and it has me really thinking more deeply about our communities and the question is you
00:15know how do we talk about health within our communities making sure that health is a
00:20conversation that we're willing to have. I find that with my family health and health care decisions
00:26was really private it's not something that we would talk about publicly so I
00:32think information is power so just like we share information around you know where
00:37we get our hair done or what books we're reading or just things that you know what
00:41schools we might be interested in for our kids when you share information you're
00:46sharing you know you're empowering each other and we should be normalizing it more.
00:51It's so it's interesting when I reflect on just growing up and the role health
00:56played in terms of how we engaged with each other. Interestingly we're very open
01:02about health and in particular as my parents got older it really I think was
01:08the linchpin for how we all had to get around the table to think about their
01:13health, their health experiences, how we advocate for them. It's another thing when
01:20you're now on the flip side and you are trying to navigate the health care system
01:26and you see how challenging and complicated it can be and so I think that is a
01:32microcosm of a lot of what families across the country are going through.
01:37Navigating the health care system openly talking about it and figuring out ways to
01:42get the right answers to make informed decisions. We do have to advocate more
01:47and being present with our family members when they are going to the doctor and
01:52making sure that we ask those questions of our health care practitioners that they
01:58can't ask for themselves and some of that of what I'm hoping that we can talk more
02:03about is one of those topics is clinical trials and how are clinical trials being
02:08presented to communities that for our communities and all communities and how do
02:14we make sure that those clinical trials represent all of us. It's completely a
02:20decision between you your family and the practitioner but normalizing it I think
02:25it's just half the battle. Often these conversations are coming up when there's
02:28a crisis that's when often people are looking for answers they're thinking what
02:32else can I do instead of being proactive in their decision making and have it be
02:35one of many things that they're thinking about as far as part of their
02:38health care decisions in the families and for themselves. I think one of the
02:43reasons why there is a delay is you know stigma that occurs within health care you
02:51know it can be very dangerous and really keep some people silent where they feel
02:57that they have to become invisible and not comfortable with asking questions or
03:02asking the information that they need. A personal story that I have with my father he
03:09was in on the medical trend for being what later we found out to be prostate cancer but because of
03:18that stigma and the mistrust that he had experienced with his health care
03:22practitioners he was delaying care he was not going to seek move forward to having an MRI but I was able to
03:31convince him that you know he had rights that were being protected and there was information that was
03:38available to ensure that those rights were protected and was able to help him to
03:44seek out the care that he needed and he was diagnosed with cancer but it was
03:49caught at an early stage where we were able to do something about it and so
03:54from helping my father that also extended to my aunts my cousins and my mother so
04:02now for that experience they are now willing to venture out and let's talk about health so that
04:11not only we understand what our health impacts are but for the generations that are coming behind us
04:18so that we know those different diseases and how do we protect them and so that they know what they need
04:25to do to be healthy there could be too much trust in the in the physician the health care practitioner
04:31to the extent you're not asking questions you're not challenging them you're just kind of receiving
04:36the information so you see some of those generational differences and how you're receiving interacting
04:42with the physicians and I think it's kind of getting back to this core fundamental of information is
04:48power to the point of even having conversations around family history family risk you may be dealing
04:57with x or y but meanwhile your parents could give you a window of insight into how this has played out
05:04within your family lineage and so that information is something you take back to your provider that
05:10could even help them inform potentially what are the right courses of action for you leaning on this
05:17notion of information is key this is where I get worried about misinformation and disinformation but
05:24a lot of times you're also going to the web right and so having the ability to know and to filter to
05:31know what is accurate versus not is challenging and sometimes I worry within certain communities too as
05:39well that information can spread like wildfire so what do you all hope for in terms of health care
05:46in the next five years what are you looking for as far as some certain advancements or progress that
05:51we can be making in the next five years so I'm excited about once again the science and how far we can
05:59take the science but I know as we take the science far the question is also how do we ensure that it's
06:06accessible and so what we do in that space to support patients to support communities to empower them with
06:16information and in my world I look at things from a digital technology lens and how do I leverage that
06:23to bring that science and that information in a way that really allows people to navigate and to operate from
06:32a place of empowerment so that you really truly are making the right health care choices for you and your family so
06:40access is key it's important and I truly hope that in the next five years we can truly broadly make care more
06:47accessible to anyone and everyone that needs it I am looking at five years where clinical trials is normalized it's not a myth it's not something pie in the sky but it is accessible
07:00for all communities and we're in those communities we have representation for all race ethnicity age gender sex and even disabilities to making sure that our clinical trials are really and truly representative and not only accessible but also having access to the information
07:28so you know we've had a full conversation it has been enlightening
07:33and hopeful that as we continue on this journey that we'll even see a lot of what we talked about here
07:39today come to fruition I agree I learned from both of you so thank you thank you I do think the future is bright
07:48and I'm excited what the future holds and I truly believe in that vision of a transformed healthcare system
07:55and excited about all of what we can do to help bring that vision and future to life
08:00representation starts with participation
08:04so let's help shape the future of clinical research together
08:09learn the facts and advocate for yourself and those coming after you
08:15so let's keep talking because our health and health of our loved ones is too important for us to stay silent
