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I, as many of you before me have said,
I'm really excited to be here.
I've really enjoyed this meeting and especially getting to be part
of this paper.
As a survivor myself and in my job I interact with survivors,
so it's particularly meaningful for me to be here and to be able
to provide the patient perspective.
And about the paper, I love the way that the patient experience
was laid out.
Cancer is very complex, there are so many elements to it and it's
just navigating the diagnosis can be so challenging and so I think
that the paper did a really good job of summarizing that and
pulling that together.
I think a lot of what we're talking about is changing the
culture of oncology.
We have this old model where the physician knows everything and
then we also have patients who are in shock and who are traumatized
by a diagnosis.
And so there is resistance from both the physician
and the patient's side.
I think that as health educators, oftentimes in developing
interventions we assume that there's a high level of
involvement from the patient, that they can and are willing
to be highly involved.
And then I think it's also important to note that cancer care
is a whole system and I think the paper lays that out very well.
There are numerous healthcare professionals,
there are family members, there are friends, there are caregivers.
And then that whole system of delivery of care is broken.
And so in developing interventions and in trying to increase shared
decision making, these are some of the obstacles that we
have to think about.
And so one of the guiding principles of my organization is
the concept of advocacy and we see advocacy on a continuum.
One end of this continuum is self-advocacy.
And so I see developing interventions as less of the
throwing information at people and seeing what sticks and, you know,
this was mentioned earlier that old view,
but really teaching people those fundamental skills that they can
use throughout the entire experience.
So some of these evidenced based skills are up on this slide,
communicating, finding information,
these are all things we've talked about throughout the day.
And so it really allows the patient to take responsibility and
to assume some of the control through active participation.
And I think there have been some questions that have come up
throughout the day about coordination of care and
who is responsible.
There are rules that need to be negotiated.
Who's responsible for decision making.
How much decision making?
And I think earlier it was mentioned that these things need
to be talked about from the very beginning,
from the moment of diagnosis throughout the entire experience.
We need to be clear about what the patient preference is and realize
that those preferences change.
As you become a more sophisticated patient your needs and your
preferences will be changing.
And so also as the patients need to brush up on some of these
skills, physicians as well need to be better equipped to communicate
and to participate in shared decision making with their patients.
And then another thing to consider as well,
I feel like a lot of intervention's focused just
on the treatment part.
We also have to remember that there are so many other things
that people with cancer and these complex diseases are dealing with;
all the psychosocial needs.
If I am depressed by my diagnosis how does that affect my ability to
interact with my healthcare team?
And so I think there needs to be some distinction between skills
versus decision aids and what is the role of having these skills so
that you don't need a decision aid for everything or so that as a
patient you can better utilize a decision aid.
We need to have these core competencies and implementation
and evaluation are not enough.
I think that IHCS characteristics are very similar to the
self-advocacy skills that I mentioned.
There is definitely some mapping that can be done.
And what these skills end up doing is help to form sustainable
self-advocacy and shared decision making.
And I think one of the really important things from the paper is
this discussion of end of life.
And I think it's obviously been in the news lately and it's really
interesting to a lot of people right now.
And what ends up happening, especially in cancer,
is that these discussions aren't happening at all.
And if they are happening, they're happening too late in the process.
One of my co-workers who passed away in March,
he had to force the issue with his physician and he's an advocate.
He worked for an advocacy organization and he had to force
the issue multiple times before his physician would actually
engage in that conversation so that he could plan properly
for his death.
I think there's a lot of confusion about the role of hope and a lot
of physicians think that it'll take away that hope from that
patient but when you're dealing with an experience like this,
there's always hope.
There's hope for a good life, there's hope for a good death.
And sitting down with a patient and actually engaging in these
realistic conversations and setting these expectations can be
beneficial and lead to better decision making and lead
to a better death.
I think some of the things that have been mentioned in the paper
and that I've mentioned so far are some of the challenges
to active participation.
I think a big one is physician motivation and perceptions.
And some of that I think was mentioned in the paper in relation
to the intervention.
But also with cancer, there's a continuum of care.
You start with treatment, you become more sophisticated,
you end treatment. Then, you enter survivorship and follow-up care.
And so as a physician and a patient, navigating that dialogue,
it needs to change as you go along the continuum.
And then obviously a big issue is integration with
other healthcare professionals.
The patient doesn't just see the oncologist,
there are other physicians.
Those physicians need to be informed about treatment,
treatment options and what's going on with that patient.
Technology, we're talking about technology but it's important that
we think about access, we think about comfort,
we think about interests in technology.
Lori mentioned that she's not interested in technology,
I think there's, you know, we need to keep that in mind as we're
developing these interventions.
And then obviously culture is a big one in that culture can affect
the way that patients interact with their healthcare team and we
need to figure out how to incorporate that into a shared
decision making model.
And from my perspective, some of the key factors to improve active
participation that I've mentioned, starting from the moment of
diagnosis there needs to be a conversation that happens with the
healthcare team and the patient to make sure that there's shared
understanding and to make sure that we sort through the roles and
responsibilities and we determine at that time what the patient
is comfortable with.
And so similar to that, we need to be meeting patients where they
are, where they are in their diagnosis and their experience,
where they are with their self-advocacy skills;
where they are with their decision-making preferences;
and adjust those periodically throughout the continuum.
So, it's not just a one-time communication,
it needs to be happening over and over again.
And really, I think, it's important that we think,
in terms of intervention development,
about setting the foundation of basic skills so that we can have
these long-term shared decision-making skills
throughout the process.
And then my final thoughts: one of my co-workers had said this
phrase, "Daunting but not hopeless."
And I think it's something that is important to remember as we are
talking about the communication process.
And that, with proper framing, patients can be more realistic
about options and decisions.
You don't-- you can be hopeful but you need to be honest.
And there is always hope to have.
And, as I mentioned, I think sometimes we get-- people are a
little confused about the role of hope.
And then, I think, the biggest thing is that cancer is a system.
Bob and I were talking earlier about how the end user needs to
get kept in mind and, I think, that's come up a few times as well.
But it's important to keep that in mind and how it fits into the
bigger systems: that when interventions are being developed,
it's not being developed without getting input from the physician
or without getting input from some other healthcare professional.
And so I think, overall I was very impressed with the paper.
I think any attempts to help wade through all the information that's
out there and to help better make decisions is a great effort.
And I think that these-- from when I was diagnosed - twelve years ago
to now - there have been so many improvements in the way that we
have resources and tools and there's so much more
that's out there.
So, I think that we're heading in the right direction but we need to
get on the same page about the share decision-making process
and roles and responsibilities.