Beyond the Clinic
Targeting Cancer: Raising Awareness to Effect Health Care Policy Change
Shankar Siva, PhD, MBBS, of Peter MacCallum Cancer Centre in Victoria, Australia, and member of the ASTRO Science Council, sat down with radiation oncologists and founding clinical leads of the Targeting Cancer Campaign within the Royal Australian New Zealand College of Radiologists (RANZCR), Faculty of Radiation Oncology Sandra Turner, PhD MBBS, and Lucinda Morris, MBBS, to discuss Targeting Cancer, the education campaign to raise awareness about radiation oncology for patients and other health care professionals, as well as the group’s recent accomplishments in effecting change in health care policy relating to prostate cancer.
Dr. Siva: To start, can you please provide an overview of the Targeting Cancer program for the ASTROnews audience? How did this come about originally? What was the problem that was trying to be addressed?
Dr. Morris: Targeting Cancer is an international campaign, aimed at raising awareness and knowledge about radiation therapy in the general community, and also improving access for patients to radiation therapy worldwide. We launched in 2013 as an initiative of the RANZCR, Faculty of Radiation Oncology, when it was recognized that there was an area of need in terms of awareness and education around radiation therapy and the under-utilization of radiation therapy worldwide.
Our audience is the general public, patients and their caregivers, health care professionals, specifically GPs [general practitioners], and also medical students, as well as key stakeholders, including the government and industry. The key campaign messages are that radiation therapy could benefit one in two cancer patients, and that it is a highly safe, effective and cost-efficient cancer treatment that is delivered by a very highly trained, skilled team of professionals using sophisticated technology. And lastly, any patient that may benefit from radiation therapy should see a radiation oncologist.
Dr. Siva: I imagine then it took a lot of teamwork, patience and leadership on both of your parts. Can you tell us about the mechanics of getting the program established and how you nurtured it to its current state?
Dr. Turner: So within the College [RANZCR] and within our Faculty of Radiation Oncology, we had been talking about the issue of raising awareness of radiation therapy and the under-utilization of radiation therapy for a long time. In 2012, raising awareness and promotion of radiation therapy and our profession became one of the strategic pillars of our organization.
With that change, under our faculty council, we formed a new set of committees and a structure that actually made the Targeting Cancer campaign one of the College’s core work areas. And initially because I was on the council, I became the lead of that particular group. And then it grew from there, in that we expanded the group out to include a lot of very enthusiastic volunteers to work in key areas.
There were two particular audiences: One was the patient facing and the other was specifically for medical professionals, particularly as Lucinda said, GPs and medical students. We developed a website, which includes a lot of video content, text and an interactive map. We set up social media channels and focused on search engine optimization.<
For the first 12 months we used an external PR consulting agency, who helped us develop a strategy and build the website. We had an official launch at one of our College ASMs [Annual Scientific Meetings] so that the membership knew about it and could jump on board. And we also did a lot of work with the other professional groups: the radiation therapists, the radiation physicists and the radiation oncology nurses, reaching out to them and attending their meetings.
So, it became a very interdisciplinary program, and I believe that is one of its strengths. It organically developed with a lot of enthusiasts that could see the value of the campaign and would then go out and organize their own events and activities. Basically, it was the goodwill and enthusiasm of our fellows and the other radiation oncology professionals with support from the College that made this a success.
Dr. Siva: You mentioned some of the key stakeholders as the public, the community practitioner, and briefly the government. Can you talk a bit more in detail about how you approach these three different groups? Who else are the key stakeholders for Targeting Cancer?
Dr. Morris: As I mentioned, one of our key audiences was general practitioners and the reason we identified them as a group was that we know in Australia and many countries in fact, GPs receive very little training or education around the basics of radiation therapy. GPs have many patients that will have a cancer diagnosis and will need to have radiation therapy. And, we also were aware that GPs and patients, both together, expect GPs to be advocates in their cancer care pathway.
So, we identified this and worked to develop a national GP education program in Australia. The program consisted of a face-to-face teaching program. We invited GPs to the radiation oncology department for a two-hour teaching session, usually held in the evening, and involved [a] one-hour case-based teaching session around two cases. The next component of the session was a walk-through tour of the department with a number of stations showcasing simulation treatment. And in some sessions, GPs could observe the patient actually having radiation therapy, so that GPs got a real sense of what their patients go through.
In total, there were around 60 sessions held across Australia and New Zealand. We surveyed GPs before and after the session in terms of their knowledge around the basics of radiation therapy, and we saw, not surprisingly, a huge increase from baseline knowledge to afterward having a really good understanding of the basics of radiation therapy and the likelihood of referring to a radiation oncologist. We also saw a spike in direct referrals from GPs in the community into radiation oncology departments.
I think that program is really one of the jewels in the crown of the Targeting [Cancer] campaign. Obviously, with COVID, there’s been a hold on that style of teaching, but we look forward to reinvigorating that program in the future.
Dr. Siva: Let's pivot to the recent Medicare prostate cancer recommendations. You both have worked really closely with the Australian government, specifically around Medicare explanatory notes and recommendation for consultation, or at least all treatment options being canvassed with patients who have new diagnosis of prostate cancer. Can you explain in a bit more detail about this particular initiative?
Dr. Turner: After we’d built some momentum with Targeting Cancer, it was recommended that we pick some specific areas that we wanted to focus on as our next project. One of the biggest ones, and one being close to my heart, was around prostate cancer and men not receiving all the information they needed for informed decision making about treatment. Targeting Cancer provided lots of materials and content to help men understand their treatment options, but also outside the Targeting Cancer campaign, there was a body of work focused on moving the dial in the area of men knowing their radiation therapy options. Men and their families and GPs didn’t know that radiation therapy could cure prostate cancer, so wherever possible, we got ourselves in places where we could get that message out.
David Letts, a prostate cancer patient and professor of law at Australian National University, had been told by his urologist that he should have a radical prostatectomy. After seeking other opinions, he decided to have radiation therapy. As a lawyer, he felt strongly that informed consent required adequate discussion with all relevant specialists and joined efforts to influence change. He shared his story through news outlets and joined lobbying efforts.
The prostate cancer advocacy work took a multi-pronged approach. We launched a position statement from our College, which was very evidence based, and we put that out in the media. It was very controversial, because basically, it said that all men who were making a decision about active treatment for their prostate cancer should see a radiation oncologist. There was a lot of pushback from that. We did some TV and written media. We really pulled on patient experiences and had some really strong patient advocates that got involved with telling their story.
There was a bit of a movement building up in the media as well and in the community, which I'll say again was very controversial. It is fair to say that we were not always supported by our urological colleagues in our mission!
We also started collecting relevant data. There's now some really good New South Wales [NSW] and Victorian data showing the woeful rates of radiation oncologist referrals prior to radical prostatectomy. These data are a few years old now but show, for instance, that only 13% of men receiving a radical prostatectomy in NSW had talked to a radiation oncologist prior to their surgery. And we used every opportunity to lobby government. When we had roundtables or other meetings dealing with radiation therapy, particularly at a federal level, the discussions would include the specific situation of prostate cancer explaining how most men missed out on understanding all their treatment options.
The period we were getting active around the prostate cancer issue, four years ago now, coincided with the MBS [Medicare Benefits Schedule] review, in particular review of urological procedures. We decided to use this as another lever to help push urologists, GPs and the pubic in the direction of fully informed decision making. For the radical prostatectomy items, we pushed hard for including an explanatory note in the items stating that best evidence-based care was for men to talk to a radiation oncologist as well as urologist as part of informed decision making, prior to any active treatment starting. It was clearly not the whole answer but designed to push urologists and consumers to think about the ideal of men seeing radiation oncologists.
There was a lot of pushback and many rounds of submissions. The committee chair was a urologist who was very against our proposal. So individually, we approached the other members on the committee who might support us: There were two general practitioners, one radiation oncologist who was obviously on board, and a couple of consumers and leaders of consumer bodies. We lobbied those people individually to help them understand what was at stake for men missing out on knowing their treatment options.
So, there was a lot of education of members on the committees and meeting requests to champion our cause with the ministers of Health and Veterans Affairs. The Chief Medical Officer (and advisor to the minister) was a renal physician and was quite supportive. A combination of all of those things, and raised awareness in the community from Targeting Cancer and other media, built to an acceptance that Medicare should recognize the role of radiation oncologists in providing information to men approaching active treatment for prostate cancer. And it became pretty hard in the end for the Minister not to agree to sign off on inclusion of the statement.
RANZCR, the USANZ and the PCFA issued a joint statement of support to build awareness of the new Medicare schedule for urological items, which included for the first time, the best practice of seeing a rad onc after a prostate cancer diagnosis
In September last year, the new Medicare schedule for urological items was implemented. Building on that, we worked with the Prostate Cancer Foundation Australia [PCFA], and our College and the urological society to release a joint media statement to promote the change. And we're still in the process of making sure that health professionals and the community know about it. There's a lot of work to do in making sure the recommendation is achieved across the board, but it’s been a big step towards recognizing how prostate cancer treatment decision making should occur.
Dr. Siva: That’s fantastic. I think you've made quite clear how this kind of language in the Medicare explanatory note will make sure that all health care professionals involved are accountable in providing the best outcomes for our patients with prostate cancer. Focusing on that, what is the scope of the problem in 2021, specifically for prostate cancer and beyond? What are the next issues that need to be addressed?
Dr. Turner: In the prostate world, it has been a win, because it's been surprisingly hard to get even the organization's advocating for men with prostate cancer to actually put their money where their mouth is and say it is best for patients to see a radiation oncologist. So, to have the PCFA on board with aligning materials on their website is a game-changer. I think that's very strong, and it gives a lot of sway to consumers seeking out their options.
Interestingly, when we talk about this now, in multidisciplinary communities there are many urological colleagues that say, “Oh, yeah, that was back then. We didn't do it right back then. You know, we're much better at referring people to rad onc now”. So, there is recognition that things should and must change. Patients are also going to push for that change.
We're seeing a lot more direct referrals from general practitioners to assist in the decision-making process. Continuing to collect the data to show progress will be important. Hopefully in five to 10 years, everyone will be surprised that men didn't get the appropriate referrals to rad oncs and it will have become the norm to do so. You know, robotic prostatectomy sounds very sexy, but we have a much sexier treatment than surgery, and the move toward SBRT/SABR, hypofractionation with all the bells and whistles of our great technologies for prostate cancer and other cancers, behooves us to keep on pushing out the fantastic messages about our therapy.
Dr. Siva: From a Targeting Cancer perspective more broadly, what's the scope of the problem in 2021 and beyond? And, do you feel that awareness is improving?
Dr. Morris: Look, I think there's no doubt that the scope of the problem remains monumental, and our work is not done. We know that worldwide awareness around radiation therapy, both in the general community as well as the medical community, remains low.
Much like ASTRO’s RTAnswers.org, the Targeting Cancer campaign aims to raise awareness about radiation oncology for patients and health care professionals.
Has the campaign had impact? It is difficult to measure, because ultimately, to say that we've had impact, we'd have to demonstrate that the utilization of radiation therapy has improved, and that's virtually impossible to do. But we do have a number of target measures that tell us that it has indeed had an impact. I think the first thing is just the sheer amount of support and collaboration for the campaign that we've had globally from within the radiation oncology community, and that includes radiation oncologists, radiation therapists and cancer nurses. Their support and engagement with the campaign in North America, Europe and, in fact, the world over has been an inspiring and unifying experience.
The other way of measuring the impact of the campaign is surrogate measures, such as our social media statistics, website engagement and media reach. Our media reach for the campaign was [in the] tens of millions of people.
And the published data from the GP program — really showing that we have improved GP knowledge and awareness and referral practices — it's also another target measure for improving awareness. So, there's a lot of work to be done, there's no denying that, but I think the campaign has made some really important gains in its first eight years thus far.
Dr. Siva: Fantastic. Okay, so this is a last question. Can you offer some advice to our readers as to how they can potentially take on this enthusiasm and bring this about in other countries?
Dr. Turner: It's difficult to just give one pithy answer to this! We have been approached by many organizations who’ve said, “How did you do it?” and the first thing I say is “Just start.” I mean, none of us are particularly experts in PR or marketing or media, but we've learned a huge amount along the way. And I think, just starting by getting the organization behind you is key.
It's a long journey, sorry to use that overused word. But it's one of those things that once you get caught up in it, it's very rewarding and enjoyable. And maybe some of the energy that goes into the more academic, scientific side of things, if just a little bit of that was diverted into advocacy and externally facing community media, we can make change.
Dr. Morris: What I would encourage readers to do is partner with the multi professional groups that exists in radiation oncology, because it is our strength as a specialty. Certainly, so much good work we've done wouldn't have been possible without the support of radiation therapists, physicists, nurses and also patients. There is nothing more powerful than a patient's story. And I think some of the best work we've done has been focused on real people telling the world about the benefits of radiation therapy for them.
Dr. Siva: Fantastic. Anything else you guys want to cover?
Dr. Turner: As one of the objectives of this interview was to examine the topic of stepping out of our traditional medical roles, there’s one more thing I’d like to say. I believe we can improve how we partner with our patients around advocacy. There has been no patient I’ve asked that has said, “Oh, I don't want to tell my story,” or “I don't feel comfortable having a photo and putting it on social media or making a video.” They want to be involved.
Maybe we don't always partner with our patients as strongly as we could around improving the profile of radiation therapy. And as well as on an individual basis, there are some really powerful consumer groups and organizations, and every step of the way, including with the political work, we’ve always had consumers working with us. They often have the ear of politicians more strongly than we do and are not seen to be pushing their own agenda [as we might be]. So, I think patient involvement in every aspect of advocacy is critical, including for policy change.