RxDM Storycast Ep02: Dr. Jack West, oncologist, Cancer GRACE

Dr. Jack West, oncologist, CEO Cancer GRACE

RxDM Storycast host Buddy Scalera speaks with Howard (Jack) West, MD, Medical Director of the Thoracic Oncology Program at the Swedish Cancer Institute in Seattle, Washington. Dr. West is also the President & CEO, Global Resource for Advancing Cancer Education (GRACE) http://cancergrace.org and a TEDx speaker. Buddy & Dr. West discuss healthcare storytelling in cancer and what that means in the age of social media.

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Transcript of interview with Dr. Jack West, MD by Buddy Scalera.

BUDDY: Hello, and welcome to the Rx Marketing Digital Podcast – The Storyteller Edition.  This is episode number two.  My name is Buddy Scalera and I’ll be your host.  I’m a content strategist specializing in healthcare communications, and you can find out more about me at BuddyScalera.com or at my blog, WordsPicturesWeb.com.

Today I’ll be sharing an interview that I did with a very special guest.  I think you’ll find this interview very compelling.

I interviewed Dr. Howard Jack West.  He is the Medical Director of the Thoracic Oncology Program at the Swedish Cancer Institute in Seattle, Washington.  But not only that, he’s also the president and CEO of the Global Resource for Advancing Cancer Education.  That’s called GRACE, and they have a website at CancerGRACE.org.

In full disclosure, I sit on the board of GRACE, which is what gave me access to Dr Jack West, and I appreciate the time that he spent with me talking about storytelling in oncology and healthcare.  He is trained at Harvard Medical School and he directs the medical oncology component of the Thoracic Oncology Program at the Swedish Cancer Institute.

Dr. West also maintains a strong clinical research focus on lung cancer, and he currently serves as the principal investigator on several clinical trials of chemotherapy and novel agents, and has authored numerous peer reviewed as well as invited publications.  But put all of that aside and you’ll hear from this interview that he is a genuinely smart and compassionate healthcare professional, so his background only tells part of the story.

The real story is Dr Jack West’s ability to tell a great a story about healthcare, and you’ll hear him talk about that.  And I should note that before I joined the GRACE board, I saw him at a TEDx.  I didn’t actually see him at a TEDx.  I saw a YouTube, and I’ll provide that YouTube link.  He spoke at TEDxOverlake and his topic was “Self Educated Patients and the Future of Cancer Care.”  I reference it here.  There’s a little bit of a spoiler in the actual discussion, so when I start talking about that, you may want to lower the volume for a minute, if you haven’t seen that video. You don’t want to ruin his ability to tell a great and surprising story.

You’ll see when we have our discussion, there are components of storytelling of when two physicians speak with one another or when a physician is speaking with a patient, he talks about what you include or exclude in your story is what drives the narrative. That’s true in any type of storytelling, including the storytelling that you have when you write a screenplay.

In my case, I am also by day, a pharma marketer, but by night, I’m a comic book author so I can tell you that what you include is as important as what you exclude.  Dr. West also talks about social networks, and he references that in his TEDX, but it’s amazing how much social networks have evolved since the first time he had talked about social networks during his TEDX and we talk a little bit about that, and about how physicians and patients use different social networks.  He talks about pharma marketing and why pharma marketing and communications has to be a combination of the heart and the head.  That is, stats can only tell so much of the story and you’ll hear him talk about that.

And then if you do work in pharma marketing and you’ve ever wondered about collaboration with patient experts, orgs and associations, Dr. West talks about the benefits and techniques of working with orgs and associations.
I hope you enjoy this, and I will let Dr. Jack do the real talking.

BUDDY: Hello.  Welcome back.  My name is Buddy Scalera and this is the Rx Digital Marketing Podcast – Storyteller Edition.  In this podcast, we talk to top storytellers who are working in healthcare to find out how to improve communications among patients, caregivers, and the entire continuum of storytelling.

My guest today is Dr. Howard Jack West, who’s best known for the GRACE website and community, but he’s also a practicing medical oncologist working out of Seattle.  Please welcome Dr. Jack West.

DR. JACK WEST:  Hi.  Thanks very much.

BUDDY: Dr. West, thank you so much for joining us.  It is truly, truly exciting.  Your background is amazing.  You’ve done some incredible things.  You have a wonderful educational background.  Can you first tell the audience a little bit about yourself, where you practice, and then we’ll get into GRACE.

DR. JACK WEST:  Sure.  So I’m a medical oncologist, as you mentioned.  I had done my initial medical training in Boston through the Harvard system and then came out to Seattle to do my medical oncology training at the Fred Hutchinson Cancer Center, University of Washington program really with the thought that Seattle was a place where I’d be happy to plant roots and stay long term, and that did come to pass.
I was the lung cancer specialist/expert at the University of Washington Fred Hutchinson system for a while before moving over to Swedish Cancer Institute. Also in Seattle and just a few miles up the road, where I am still the lung cancer specialist for that large system.  It’s a private practice community based system, but a tertiary to quaternary care center with a lot of clinical research that remains a big part of what I do.
I also see and treat patients with GU, genitourinary cancers; prostate, bladder, testicular, mostly.  And I have an ongoing interest in patient education and physician education that I’ve had really since I’ve been doing lecturing to docs and that really led to my interest in working directly with the patients.

BUDDY: So working directly with the patients, I should note that you are the founder of the Global Resource for Advancing Cancer Education, short for GRACE.
Before we get too far, I should note that I’m on the board.  Full disclosure here.  I’m on the board because I believe passionately in the mission that you set up for GRACE.
Can you talk a little bit about GRACE, which will help set up the trajectory of the conversation that we have today?

DR. JACK WEST:  Sure.  It was about twelve years ago that I was in the situation of trying to educate docs about the increasing complexity of lung cancer or other cancers, and that’s a good problem to have because there have been so many developments in the treatment of cancer but that is really only helpful if we can deliver these new treatment options to patients and I was seeing that a lot of patients were getting less than the best care that was possible for them when they would come for a second or third opinion.

At the same time, docs are so busy, especially the ones who are seeing and treating fifteen or twenty or more different patients and cancer types over the course of a day.  It got me thinking that it would be incredibly helpful to get information directly out to patients and caregivers.  This was at a time when information was being democratized in all sorts of arenas, where travel agents and newspapers and all of these kind of incumbent industries were disrupted by the democratization of information directly to the end consumer, and it got me thinking that if I could not effectively reach and change the behavior of enough of the docs, I just wanted to make sure that one person in the room knew the best treatments available, and that was ok if that was the patient and the caregiver even if the doc wasn’t.
Now the fact is that most often the docs are also aware of these things and offering some of the same suggestions, but I was also very comfortable with having it be a virtual second opinion for the people who might be coming from a separate state or for whom it might be a hardship to come because they were older, frail, in a wheelchair, whatever.  Being able to get information online that could corroborate what you were hearing from your own doctor could provide a great reassurance if you weren’t sure if what was being recommended in Billings, Montana would be the same treatment recommended at a specialty facility in Seattle.  If there was a difference, well, you could ask your doctor about it and talk about that and take it from there.


“Everybody’s brain is really equipped best to think about narratives, about stories.”

BUDDY: What was amazing when I started to go into the message boards that you had set up was just how active the community is, and not just about themselves.  It would seem that even after somebody’s lost a family member or has been otherwise put into remission, they continued to be part of the community.

Why do people keep coming back to the GRACE community message boards even after cancer isn’t a primary concern in their life?

DR. JACK WEST:  I think that people become very invested and the reality is that most people don’t participate in any kind of support group for their cancer.  In many places, there isn’t one offered, and the fact is that I think the people with whom you can feel the clearest connection are the people who you know are going through some of the same things, who have followed the same path along with you.  I think that the amazing thing about an online community is that it can transcend geography and so just like, I had actually when I started GRACE, had read “The Long Tail” which was about how much value there is in the [inaudible] part of the curve beyond what is available in any record store or bookstore or whatever, and talking about how Bollywood movies really have an audience but the audience is distributed enough that they are not concentrated in any place that can support a local screening except one theater in New York, at least at that time, but when you don’t need to have that geographic density, you can get incredible support and they are very popular in a kind of Netflix model.
Now, I was thinking about unusual to rare cancers and frankly what we’ve seen in the last ten years is a fragmentation of what was previously a largely monolithic cancer community.  You had breast cancer or lung cancer and you didn’t get divided much beyond that, but in the last ten – twelve years, there’s been incredible splintering of that based on specific molecular characteristics and we’ve really learned that there’s a very different picture as we tease out the different subtypes of patients.  But they can get to be one and two and four percent populations, not all of a certain kind of lung cancer in a hundred thousand people. So how do these people connect with each other?
Well, they are rarely, there’s not going to be a lot of these one percent subgroups in the same city to form a group together, but they find each other online and the amazing thing is that they share information about clinical trials and their own experiences and I think that the more exclusive the group – this has always been the case in humanity – the more exclusive the group, the more of an affinity you feel and that can transcend geography and people find each other and help each other and feel a true connection online and people become very invested.
I think that oncologists and physicians in general have become enamored of statistics and evidence based medicine, and of course that is really, has been in many ways, a benefit in the sophisticated way we think about treating patients, but lost is the fact that everybody’s brain is really equipped best to think about narratives, about stories.  I mean we are all swayed by individual patient experiences.  As much as we can talk about the statistics of one treatment or another, doctors themselves think about their own experiences, the cases that they have treated, or that their colleague has, or an amazing response that they heard about at a meeting and patients of course are the same way.  They’re very affected by the results they learn about from their new friends in the online communities just the same ways we can read whatever we want in the New York Times or Rotten Tomatoes but when you’re in the line at the theater, actually the person in front or behind you says “oh my god I just saw this other movie and it was amazing,” you’re very swayed by that even though that person doesn’t have a wisdom of crowds.  We’re still so equipped to think in terms of stories and medicine is every bit that way.


BUDDY: Dr. West, I think one of the things that I’d like to unpack that you just mentioned was storytelling and as a physician, what is a physician’s story narrative in terms of treating, and you don’t have to limit it to just cancer.  You certainly know a lot of physicians in your community.  What is that narrative of a physician?  What is that journey that a physician goes through?

DR. JACK WEST:  Well I think for ourselves, we certainly think of creating our own personal identity of the kind of patients that we see, we increasingly specialize as the field has become more complex but I think that medicine is completely a storytelling industry, field.  The basic concept of introducing a patient starts with the history of a present illness and it is a narrative.  You describe how the patient was feeling well until three months ago and they became short of breath, and it has an introduction.  It leads up to the point where you are now, and leads to a conclusion of “and here’s what we’re going to do.”  So I think that it’s amazing to see how we think about every individual patient as having their story that is still being written.  In fact, when I talk to patients about what to expect from this or that novel treatment, I will use wording to say, “you know, we’re just learning about what immunotherapy can do because most of the patients who are still responding have only been on it for x period to time and we just don’t know long that’s going to be.”  That story is still being written.  I think it’s telling to use that phraseology because that is the way both patients and physicians think.

We think of ourselves as a story.  We think of what’s going to happen to our disease course as a story.

BUDDY: One of the things that struck me when I was first getting to meet you was how effectively you told a story during a TEDX presentation.  We’ll include that in the show notes and it will probably make you blush a little bit, but it was a tremendously powerful story, and what I was impressed with was your ability to both weave in medical narrative, but also the history of the patient and you made that patient matter.

At the risk of kind of blowing the fun for the people that are going to watch the TEDX is that you had a massive reveal at the end.  The massive reveal showed your ability to say look, it was the patient’s story of somebody who had presented with symptoms, had never smoked, came to you.  That person’s user journey or trajectory intersected with yours and then it became a joint story.  It was your patient’s story of him living on his own, your story of living on your own, treating as a physician, then you intersected.  You wove in that narrative.  It was a tremendous TEDX and I have to tell you I went back and rewatched those.  Very impressed.

Talk to me about the development of you getting on the stage to do a TEDX and then how it impacted your life in the way you thought about telling story narratives.


“I really found myself thinking ‘what if we had educational programs in medicine that didn’t suck?'”

DR. JACK WEST:  I really became enamored of that format and was honored to have had the opportunity, when invited, to speak at a TEDX, so as I said I think that the patient experience lends itself, and the reality is that the patient who you see is a combination of their medical story and their personal story.  That of course made it that much more engaging.

The thing that gets me really excited as well is trying to think about how to apply the dynamic way of communicating that the Ted programs, TEDX’s, etc., work to convey and that the opportunities in medicine because all of medicine is trying to exchange complex information, but we tend to do it in a very ritualized way that is almost systematically disdainful of dynamic communication and I really found myself thinking “what if we had educational programs in medicine that didn’t suck?”

It’s a novel idea because we’ve really had to work from a very systematic bias that serious medical or scientific content has to be serious and dry and relatively un-dynamic and I just thought that it would be wonderful if, and really beneficial for the audience and a broader world, if we could communicate important information in a dynamic way and not just in a very ritualized way, which I think is really still playing out.  It’s been beneficial that at more and more of the continuing medical education programs that I go to, some of which I actually organized, the format is mixed up and it’s much more interactive.

We have a lot of question and answer portions, some of them are audience response, multiple choice, what would you do.  There are debates, five or ten minutes on either side of a complex story.  There’s a lot of case based presentation and there’s a lot of panel discussion and I think that has really been a very significant change over the last five to ten years.  I was an early proponent of this before it became as common and though it’s no longer like I’m the only person doing it, I think that’s very good for the entire community because the audience gets more out of it and I think that the presenters do as well.

This has evolved and it’s not perfect and many of our big meeting presentations are still ritualized and very narrow and I think overly formal in a way that is not the most effective way to communicate, but I think we need to measure from where we’ve been and then the not very recent past, and the TED concept has bled into other areas, including ones that were, almost interest and dynamism were almost verboten, so I think that’s a great change and I’ve been asked in many forums now to give those kinds of presentations. Not always – in fact no other TED Talks specifically, but in various other meetings where I’ve been asked to speak because they want someone dynamic and I think it’s great that that is getting integrated into more and more medical education.

BUDDY: Do you know of any type of formalized training that physicians get regarding storytelling or is it something that you learn on the road as you go?

DR. JACK WEST:  I would say it’s far more on the road as you go.  But, it’s just on the job teachings.  It’s kind of like teaching comedians about timing and reading an audience, etc.  You, in medical school, may have classes on the medical narrative.  I actually had, during the first part of the day we’d often have, where I was trained, the formal teaching on physiology and anatomy and biochemistry, etc., and then some afternoon classes would be in something different about the emotional experience and medical fiction and kind of exploring what we can glean from that, so yes, there is some aspect.

I believe there’s probably some medical schools that have an elective on medical presentation but the overwhelming majority of it is on the job training because when you go on rounds, you are essentially being trained to distill a patient’s story into anything from essentially an elevator pitch presentation to a minute or two at the bedside or outside the patient’s dorm more commonly, but everything we’re doing is essentially communicating for the patient record or to each other a telegraphic narrative and we all just get feedback from that.
I would say that in some specialties it’s more value than others.  Surgeons still have to do that, but more of their time actually doing surgical activities and interventions but in any of these fields the process that starts with the third-year medical rotations of rounds and a brief presentation at the bedside is your first real foray into storytelling, and it never stops.

Every time a physician calls me for a so called curbside consult, it’s the same concept – “let me tell you about this never smoker thirty-four-year-old I have who’s got this really aggressive cancer that didn’t respond to x, y, or z and has this mutation, what do you think we should do?”  But these are all some form of a concise story.

BUDDY: Well yeah, and it’s interesting the way you describe it right there, Dr. West, is that in terms of storytelling, you will establish character and setting and what you just did was here’s this patient, here’s the conflict.  The conflict is the cancer isn’t responding to this particular treatment.  That’s classic story structure.  Now that begins the trajectory of the rest of the story and I think that it’s, you’ve intuitively, without maybe any formal training in storytelling, basically outlined the way real stories are told, which is set up, what’s the situation and the characters, what’s the conflict, and that begins that trajectory.  I think that’s amazing.

DR. JACK WEST:  Can I also say one interesting thing that we all do is add color to kind of justify why we’re going and by “this” I mean there’s certain code for if you want to say I want to be very aggressive, you say well this is a thirty-nine-year-old mother of two small kids, or very healthy, or you’d say this man came in with a walker, things like that.  This patient basically just wakes up and plays sudoku and that’s it.

These are the inflections we add, that lead the witness or kind of suggest where things are likely to go we add that kind of flavor I believe to shore up, in a potentially ambiguous situation that we think this is a patient who we would like to treat beyond the current standards and in an aggressive way, a young mother versus this is an older person and if I include some backstory of a few other medical problems.
I’m really trying to convey that that’s where I would like to weigh things so it’s not very different from actually what you include in any story, what you choose to include or what you choose to exclude are extremely important in the overall picture.

BUDDY: Wow, that’s fascinating.  I mean what you’re talking about in a lot of ways, Dr. West, is storytelling and storytelling improvisation.  Improv will allow you to hand that over with some sort of open intent so that the person who you’re talking to, because you’re talking to another treating physician, “where are we going with this story,” and then you move that story along collaboratively.  Does that sound about right?

DR. JACK WEST:  Yes.  I think that’s absolutely true so I think it’s, anyway please go on.  I was, I’m trying to think back to one of the other thoughts I was going to say about this issue.


The Impact of Social Media on Medicine

BUDDY: In the video that you had done, the TEDX that you had done, you mentioned that cancer effects everyone, not just the patient.  You had noted the whole family and the entire social network.

Now it’s interesting you said this in 2011, you used the phrase social network.  Since that time the concept of social networks has evolved dramatically, right?
Talk about the evolving concept of social networks and how they fit into treatment both for the patient and for the attending physicians.

DR. JACK WEST:  Ok.  So a couple of thoughts.  One is we have historically thought of the physician and the patient as some dyad and one of the points that I made in that TEDX talk is that historically for centuries it was a unidirectional model of the doctor telling the patient what to do and the patient nodding and hopefully accepting that, but we’ve moved not just into an era of much more bi-directional discussion where a patient may come in asking a question about some symptom or some new drug they had about in direct consumer advertising or read about online, so it’s bi-directional but the idea is it’s no longer just this concept of the patient and the physician in the room.

It’s really all of the influences that come outside of the room and that includes everything from what the person sees on TV, what the patient’s families and friends and people they know online in those support groups.  Everything that people are telling and sending, “hey I read this thing about a new trial, what do you think about it?”

And from the physicians point too, that we don’t work in isolation.  We are affected by things like a growing proportion of, a growing weight on guidelines, clinical guidelines, our colleagues experiences if I learn from one of my colleagues in my practice of a patient having a terrible side effect from a treatment that I might consider.  It doesn’t even have to be my direct experience to impact my view of it, so we really need to think not just about the patient and the physician but all of these other important factors.  And this is diversified.

It’s no longer like a hundred years ago when it was just a person, their radio and their newspaper that was there, and immediate family but now there’s really no limit to the sources of that social network.  It can be all the things they read about and hear about on Facebook and Twitter and people emailing them, from distant relatives who read something or saw it on 60 Minutes, and these are all part of the social network.

If I can, I’d like to go back to one of the thoughts I just wanted to include that slipped from me and that is the difference between an identified life and a statistical life and I think it’s really interesting that we have a detached view as physicians, or maybe all people society, about, oh, we know what proportion of people may live through a certain stage of cancer or from a certain treatment and we might process this as ok, a 17% chance, x, y, z.

It’s very different when it’s the patient and the patient in front of you and they’re thinking about what is their chance of being a survivor because percentages apply to populations but we’re really only interested in that individual patient, what’s happening for them.  You either are going to respond to treatment or you won’t.  You either will have a toxicity or you won’t.

When we try to be detached physicians thinking in terms of survival curves and populations and broad recommendations, that only takes you so far when you have the patient in front of you who is an identified life.  We are thinking, and I think that issue of personalizing a patient to say “oh, this is a young mother who’s really eager to live to see her sixteen-year-old graduate high school” or something like that, these are ways to personalize beyond having us think about just people in statistical ways.

So I think that’s really very interesting that this concept of storytelling is partly to set the stage of putting patients into a population group to think of but in some ways I think that the added flavor of color is to, in certain ways, break from thinking of them as just a statistic and to individualize, because as docs we are nominally responsible to be stewards for societal resources and give appropriate standard of care treatments, but we’re also, of course, incredibly beholden to our individual patient and in some ways those can conflict what our brains might tell us is the most rational thing to do may not be best when we’re thinking about the long shot that would be the best chance for a patient in our room with us.

BUDDY: It’s great to hear that Dr. West. I would imagine that you have to zoom in and zoom out very, very quickly.  You’re zooming in on the tissue that’s affected in the body or the health system within the body that’s being affected.  Then you have to zoom out and remind yourself that’s attached to a person, that’s not just tissue.


“Physicians gain experience in switching between statistics and stories”

DR. JACK WEST:  But I think that it’s really interesting how when we have a tumor board discussion, which is when a group of docs from all different specialties get together to discuss case after case together, we generally make our recommendations in a more detached way than we do when the patient with their pleading eyes, or comes in with their family who are all eager to pursue anything that has the best hope for them.  I think there’s just this disparity in how not just patients think about statistics versus individual people, but as docs we do.

I also think that physicians gain experience in switching between statistics and stories and to highlight this, I will say that I have learned over the years that even though docs often process things in terms of learning that one study has a 30% 5-year survival versus a 35% survival, when we talking with patients it’s often to say, “you know I just had a patient who got this or that treatment and I saw them yesterday in the clinic and they’re six years out and they’re doing great and that could be you,” and that is really not the most rational way to present things but I don’t think that communicating effectively is necessarily communicating the most rationally.

So it’s just really interesting we are so much better equipped to think in ways that our own brains frame it and I’m a student of behavioral economics and medicine and I think it’s fascinating to see that we can kind of lead bias and discussions about whether to pursue a surgery that has a 90% survival, which most patients would say sounds great, versus a 10% death rate.  It’s the same statistic but if you present it one way or another you’ll have a very different outcome in how receptive people are to that.

And the same way, I think we just learn over time that what resonates with patients and family members is often not cold statistics but the story of “I have a patient who got this or that treatment and had an amazing response and is now three years out and has no evidence of their cancer.  That’s an anecdotal case and has far less statistical strength than a population based study of a thousand patients but it just doesn’t sway people the same way as human level stories of how different patients did.

Certainly if you meet that patient, if you have a patient in the support group who got the same treatment you’re thinking of and they did well, that’s great.  If that same patient had a recurrence and died during your time following them, you might be far more wary and all the statistics in the world aren’t going to change that.


“The most valuable thing to convey to pharma folks or marketing folks is that it needs to be a combination of the heart and the head”

BUDDY: So probably a good deal of the people who listen to me are people who are not practicing physicians.  Perhaps they might have a background in healthcare, but for the most part a lot of them work in either the marketing or the promotions or the communications end of manufacturing, or in agencies.
What can people who work in marketing and communications who are trying to communicate to oncologists, what do they need to know about communicating with oncologists, and by extension even other treating physicians?

DR. JACK WEST:  I think that marketers know this better than physicians.  I think as I said for me, it has taken some time to learn that balance and I think it varies from patient to patient how statistically oriented versus case-based story oriented they are.

I think that most marketing has learned since the original mascots for, since the Marlboro Man, that it’s about creating an identity or an affinity of wanting to identify with somebody else and be like them, Marlboro Man being a perverse example I would say, but just going back to the dawn of TV advertising.

I think that the most valuable thing to convey to pharma folks or marketing folks is that it needs to be a combination of the heart and the head.  It needs to be neither Kaplan Meier curves alone, nor a puff piece of someone dancing in the fields, but something that can illustrate how to translate the hard data into a human level impact.  I think that marketing people have been doing that more effectively than physicians for a long time.  But I would say the best thing is to have us all work on finding out what communication is really most effective and highlighting to docs that case-based studies are not something to be dismissed.

Anecdotal reports, which have always had a great hook for us – that’s gravitational pull – are a very legitimate way to communicate a point effectively if just as one human level representation of a much bigger whole.  I think that the zoom in zoom out is very effective.  There’s room for both.  That this is all the same process.  You can talk about that you have to look at the big picture, but close in tightly on one character because our brains are just not equipped to be that compelled by cold stats.  We should make a pitch to both the big picture statistical story that dictates policy, and the hook of the benefit that it confers for individual patients to make us feel good about that.

BUDDY: And what kind of channels do you go to research new treatments?  Obviously you’re keeping up with many, many different drugs, many that have been in the marketplace and then new ones as well.  Where do you find yourself going to collect that knowledge and insight about how you’re going to incorporate it into your treatment regimen?

DR. JACK WEST:  I think that there are two leading sources for docs at least.  One is Up to Date.  If there was one medical resource, I would probably rely on that.  I need to disclose that I am an author of a few sections of that, but that’s like a Wikipedia for medicine or I would say the source if there was one source that’s credible.  Importantly, it presents evergreen content.  Every section of it is updated every six or twelve months as new information comes out and it’s a combination of here’s the evidence and then at the end, here’s what we do, including caveats that sometimes there is no clear best answer so here’s our judgment and I think that’s very appropriate.  You can see from the list of authors that it’s not some faceless entity but these are just people making judgments which is what we all have to do at the end of the day.  Sometimes there’s a clear standard of care and sometimes there really isn’t and it’s just a whole lot of defensible options to consider among.

I would say that another is NCCN guidelines.  These are also dynamic ones that change over time, have a huge influence on what gets paid for of course, but I think more and more docs are looking to these to decide what defines the standard of care today.  So those are the two clearest ones.

For patients, I think GRACE is a key place but not the only one, and I largely go by Google searches to see what matches best with the most specific search terms I can get.  If I’m looking information about a specific mutation, there may not be any one site.  I would love to have GRACE be a central site with all sorts of experts contributing great information and have it be a Kahn Academy of cancer information for patients, but the reality is that right now there are many good sites for patient education without any clear overwhelming leader in that space like I would say that Up to Date and NCCN guidelines are.

Of course we look at what just came out and is being covered in the journals, so there’s some that are really important.  We know that anything coming out in New England Journal of Medicine has an implication of potentially changing the standard of care.  Lancet Oncology is another big one, as is Lancet, though Lancet Oncology is mostly cancer work, that is most relevant to me, and I am also the web editor of JAMA Oncology which is rapidly picking up speed. These journals are putting out information in a timeline that we hope has the potential to at least get physicians to think about changing practice and also say it’s relevant. One of the sections that I run in JAMA Oncology is a patient page that is specifically education for patients with art from the JAMA team that talks about symptoms or new treatments specifically for the lay public, and I think that JAMA and JAMA Oncology and other journals are increasingly recognizing the value of packaging information for patients and families rather than expecting or wanting to have this siloed just for medical professionals.


Working with Orgs

BUDDY: Going back to something you just mentioned, again being mindful that the audience that I have is probably more marketers than people working journals, how might brands and manufacturers work with orgs?  Now I know your perspective is mostly from GRACE, but how might orgs and manufacturers work together to the greatest benefit to the patient and the doctors doing the treatment?

DR. JACK WEST:  Well I think that there’s a certain credibility that comes from experts that interestingly could be docs of course, but also even patients.  I think that there would be incredible value in various companies not limiting themselves to promoting a message that has been vetted by the legal team but by enabling the opportunity to, or promoting the concepts, that are brought up as docs are doing education in their own words.

GRACE is working on offering this kind of thing where we can package a best of hits in a certain tumor type with a specific mutation or developments in immunotherapy and ideally this could be sponsored by a company in a way that Mutual of Omaha sponsored the Wild Kingdom all those years ago.  It was a public benefit with a huge halo effect because there wasn’t any artificial feeling sell there.  It was authentic and I think that that authenticity is enormous value.

It’s one thing to have the people who are paid by a company singing that company’s product’s praises.  It’s far more valuable to have the people who are not beholden to a company spontaneously singing the praises of this or that drug.  The docs, the patients, I think it’s way more valuable of course to have positive things said when you’re not in the room and so I just think that we appropriately cynical about the messages that are approved by the legal team, and that as the audience.  I certainly — as a physician thought leader working with various companies — have a hard time being confined by the lawyer-vetted language and I think it is incredibly more valuable and authentic to enable things like continuing medical education and patient education that gives a wider berth to let docs and patients talk about things freely. I think it’s good business as well as the right thing to do with a huge halo effect.

BUDDY: That’s great.  Dr. West, we’re coming to the end of our time here.  I just want you to describe a little bit about how people can get involved with GRACE if they are either patients, caregivers, or industry.  Where can they find GRACE, and what’s the best way for people to start to get involved tomorrow or today?

DR. JACK WEST:  Well, I would say that there are many potential ways.  I work with my network of physicians all the time to broaden the kind of cancers that we cover, so if there are physicians out there would like to contribute any content, the site is CancerGRACE.org.  You can email info@CancerGRACE.org about any of the potential options that people might be interested in, whether that is contributing some video piece or a written article, about working with us on packaging a page of greatest hits about the latest information in a specific setting, immunotherapy for lung cancer, or the best treatment for this or that mutation in this or that disease.  We are incredibly eager to do that as well as explore other educational opportunities.

We do live programs with patients.  We’ve thought about doing advisory boards with the patients and caregivers about what they’re most interested in.  So we are always looking for new opportunities and ideas of different platforms to help the patients, and especially to get the information that we’re already doing out to the patients, which I think is a great appeal of the kind of curated most relevant content about a specific page, just about a specific situation being put on a page with some branding by a company.

BUDDY: I’d like to add I think you’ve really expanded over the past couple of years.  It’s not just the website, it’s Twitter, Facebook, YouTube, right.  They can find GRACE in a myriad of channels, right?

DR. JACK WEST:  Yes, in fact it’s been quite gratifying.  Sometimes when I’m writing a paper about a topic, I’ll just do a straight up Google search for a topic and I’ll find that five of the top ten organic search results are from GRACE, which is great except if I’m trying to find new information I don’t need the stuff that I already put up there.

BUDDY: A happy problem though, a happy problem.

DR. JACK WEST:  It is. It is nice to see that happen.  It is more than it was.  We have far more, an ever-growing array of cancer types and contributors, experts from all different aspects of cancer right now.

BUDDY: Dr. West, where can find you, and/or work that you’re contributing to?  Obviously the CancerGRACE.org website.  Where else can they find you?  Twitter, conferences, websites, where can they find you?

DR. JACK WEST:  I am at Twitter: @JackWestMD.  I tweet something most of the time.  I have a website, www.JackWestMD.com that I should probably update in terms of future speaking events but I have not done that as I should, but that’s a very easy thing to do and I’m mapping out all the time my future speaking events.  It’s good to be busy.  My default location is Swedish Cancer Institute in Seattle and I can be reached, I’d say the best way is JackWest@gmail.com as well, so feel free to reach out.  Thanks.

BUDDY: That’s great.  Dr. West thank you so much for making the time to talk with us at RxDigitalMarketing.com – The Storyteller edition.  I hope that people check out the website and continue to contribute to the community, and if they haven’t, for them to sign up and join the community that you’ve set up.

DR. JACK WEST:  Thanks so much.

BUDDY: Alright.  Thanks everybody.  Next week we’ll be having future guests and I look forward to hearing your comments and have a great day everybody.

So that’s it.  That was Dr. Howard Jack West.  He’s the Medical Director of Thoracic Oncology program at the Swedish Cancer Institute in Seattle, Washington.  I thought he was an amazing guest.  He was bringing so many compelling and thoughtful topics forward for those of us who are working in pharmaceutical or medical or healthcare storytelling.

He brought a lot of great insights that you can apply to your job and to the communications that you’re generating.  What you include in your story is what drives the professional narrative.  That was a great insight from Dr. West.  His observation on the evolution of social networks and what they mean to professionals and patients.  Why pharmaceutical marketing has to be more than stats, and I think he had used the phrase “a combination of the heart and head.”  That’s such a great binding concept that it should drive all the ways that you present information knowing that data alone doesn’t always tell the story.  You need to have the heart and  head together.

And then of course the benefit of working together with orgs and associations.  I think getting perspective of a healthcare professional is incredibly valuable, particularly if you work on the marketer’s side.

Please subscribe to the podcast on iTunes or Stitcher.  You can find us at RxDigitalMarketing.com.  Be sure to check out the other podcasts that are part of the network.  Matt Balogh is a content engineer.  He talks about topics relevant to us as pharmaceutical communicators.  He’s talking about the Internet of Things.  Wonderful podcast.  Super smart dude.  Definitely want to check that out.

Again, my name is Buddy Scalera.  I am a content strategist working in pharmaceutical communications.  Find out more about me about BuddyScalera.com, at my blog WordsPicturesWeb.com, and I tweet @BuddyScalera so I hope you check that out and I hope you enjoyed this episode.

I welcome your comments, your criticisms, and your suggestions.


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