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
00:26decisions was really private it's not something that we would talk about publicly so I think
00:33information is power so just like we share information around you know where we get our
00:37hair done or what books we're reading or just things that you know what schools we might be
00:43interested in for our kids when you share information you're sharing you know you're
00:47empowering each other and we should be normalizing it more it's so it's interesting when I reflect on
00:54just growing up and the role health played in terms of how we engaged with each other interestingly
01:01we're very open about health and in particular as my parents got older it really I think was the
01:08linchpin for how we all had to get around the table to think about their health their health
01:15experiences how we advocate for them it's another thing when you're now on the flip side and you are
01:23trying to navigate the health care system and you see how challenging and complicated it can be and
01:31so I think that is a microcosm of a lot of what families across the country are going through navigating
01:38the health care system openly talking about it and figuring out ways to get the right answers to
01:43make informed decisions yeah we do have to advocate more and being present with our family members when
01:50they are going to the doctor and making sure that we ask those questions of our health care practitioners
01:57that they can't ask for themselves and some of that of what I'm hoping that we can talk more about is one
02:04of those topics is clinical trials and how are clinical trials being presented to communities that for our
02:12communities and all communities and how do we make sure that those clinical trials represent all of us it's
02:19completely a decision between you your family and the practitioner but normalizing it I think it's
02:25just half the battle often these conversations are coming up when there's a crisis that's when often
02:29people are looking for answers they're thinking what else can I do instead of being proactive in their
02:34decision-making and have it be one of many things that they're thinking about as far as part of their
02:39health care decisions and the families and for themselves I think one of the reasons why there is a delay is
02:47you know sick stigma that occurs within health care you know it can be very dangerous and really keeps
02:54people silent where they feel that they have to become invisible and not comfortable with asking
03:01questions or asking the information that they need personal story that I have with my father he was
03:09in on the medical trend for being what later we found out to be prostate cancer but because of that stigma
03:19and the mistrust that he had experienced with his health care practitioners he was delaying care he was
03:26not going to see move forward to having an MRI but I was able to convince him that you know he had rights that
03:35were being protected and there was information that was available to ensure that those rights were
03:41protected and was able to help him to seek out the care that he needed and he was diagnosed with cancer
03:49but it was caught at an early stage where we were able to do something about it and so from helping my
03:56father that also extended to my aunt my cousins and my mother so now for that experience they are now
04:07willing to venture out and let's talk about health so that not only we understand what our health impacts
04:15are but for the generations that are coming behind us so that we know those different diseases and how do we
04:22protect them and so that they know what they need to do to be healthy there could be too much trust in
04:28the in the physician the health care practitioner to the extent you're not asking questions you're not
04:34challenging them you're just kind of receiving the information so you see some of those generational
04:39differences and how you're receiving interacting with the physicians I think it's kind of getting back to
04:45this core fundamental of information is power exactly to the point of even having conversations around
04:53family history family risk you may be dealing with x or y but meanwhile your parents could give you a
05:01window of insight into how this has played out within your family lineage and so that information is
05:08something you take back to your provider that could even help them inform potentially what are the right
05:14courses of action for you leaning on this notion of information is key this is where I get worried
05:21about misinformation and disinformation but a lot of times you're also going to the web right and so
05:28having the ability to know and to filter to know what is accurate versus not is challenging and sometimes
05:36I worry within certain communities too as well that information can spread like wildfire so what do you
05:43all hope for in terms of health care in the next five years what are you looking for as far as some
05:49certain advancements or progress that we can be making in the next five years so I'm excited about
05:55once again the science and how far we can take the science but I know as we take the science far the
06:03question is also how do we ensure that it's accessible and so what we do in that space to support
06:11patients to support communities to empower them with information and in my world I look at things from a
06:19digital technology lens and how do I leverage that to bring that science and that information in a way
06:28that really allows people to navigate and to operate from a place of empowerment so that you really truly are
06:36making the right healthcare choices for you and your family so access is key it's important and I truly hope that in the
06:44next five years we can truly broadly make care more accessible to anyone and everyone that needs it
06:50I am looking at five years where clinical trials is normalized it's not a myth it's not something pie in
07:00the sky but it is accessible for all communities and where in those communities we have representation
07:10for all race ethnicity age gender sex and even disabilities to making sure that our clinical trials are
07:20are really and truly representative and not only accessible but also having access to the
07:27information so you know we've had a full conversation it has been enlightening and hopeful that as we
07:35continue on this journey that we'll even see a lot of what we talked about here today come to fruition
07:42I agree I learned from both of you so thank you thank you I do think the future is bright and I'm excited
07:49what the future holds and I truly believe in that vision of a transformed healthcare system and
07:56excited about all of what we can do to help bring that vision and future to life representation starts
08:03with participation so let's help shape the future of clinical research together learn the facts and
08:11advocate for yourself and those coming after you so let's keep talking because our health and health of our
08:18loved ones is too important for us to stay silent thanks for joining me thank you for having us thank you
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