Online oncology: Building (dis)connections
The online resources available to us and to our patients to enhance cancer care are expanding at a dizzying rate.
Leveraging digital technology through social media, smartphone apps, electronic health records and big data, and machine learning projects are just a few examples of how software platforms are transforming cancer care delivery and value.
Just this morning, I have responded to a couple of patient questions that came to me through our electronic health record’s patient portal, checked the status of a clinical trial on our website, and have taken a few minutes to see what my friends and colleagues are tweeting about today. All of this is, of course, totally routine for us now — even for those of us who are from a generation that probably only scratches the surface of what is possible with current software.
Patient portal use
Although there is no doubt that the level of connectedness achieved with many of the web-based tools is truly remarkable, a few reports have reminded me that these tools are imperfect, and that there are unintended consequences of the widespread and rapid adoption of these technologies.
The use of patient portals by oncology patients is one example.
At our institution, we have worked hard to increase the use of our patient portal and have seen a substantial increase in the number of patients who have signed up. This campaign to give more patients direct access to their lab results, imaging, clinic notes and, in some cases, control over clinic scheduling has been largely welcomed by our providers. Some ongoing concerns exist about the appropriate time to release lab and imaging results to patients but, for the most part, there has been buy-in to the improved access the portal provides.
That said, the direct interactions I have personally had with my patients through the portal are relatively few, although I am aware that many of them access results and, occasionally, a patient will ask me to correct or explain an entry in their clinic note. In general, the portal has not impacted my practice as much as one might expect.
A study published in JAMA Oncology provides some important insights into portal use by oncology patients from 2007 through 2016.
The investigators found that the proportion of patients with cancer who signed up for the patient portal increased from 26% to 62%. Although younger patients appeared more likely to use the portal in the earlier years, at the time of the report, the median age of the patients with an active account was 64 years. Also, 75% of the patients with accounts were white. Patients primarily used the portal to view radiology results — not surprising given the emphasis of imaging in our practices — but, of concern, black patients and Spanish-speaking patients had significantly lower rates of results viewing.
Also of interest is that, in recent years, there has been an overall decline in the proportion of results reviewed by patients. So, despite the goal of increased access to health information for our patients, this study suggests that new disparities have emerged and that, for whatever reason, the use of the portal is declining. Despite a laudable goal of increased transparency in cancer care, there is an apparent disconnect with at least some of the end users.
Researchers from The University of Texas MD Anderson Cancer Center investigated cancer-related use of the web and social media among patients in one of their early-phase clinical trial programs, specifically focused on molecularly targeted agents.
As with the previously mentioned report, it appeared that the overall experience for patients was positive but, again, there were reported downsides.
Non-Hispanic whites again were the predominant racial group reporting web and social media use — at more than 80% — and internet use was associated with an income of $60,000 per year or higher, further examples of potential disparity in access. Additionally, use of the internet appeared age related, being more widespread among patients born from 1965 onward than older patients.
Interestingly, 56% of patients reported feeling empowered by the information they obtained from the web, whereas 34% reported elevated anxiety and 17% reported confusion as a result of browsing the web.
In addition to the so-called “digital divide” developing among some of our underserved populations, this study provides insights into the way in which we develop our informational websites — when anxiety and confusion rates reach the levels reported here, it is clear we are not delivering information in the most effective ways, bearing in mind that cancer center websites were cited as the most frequent source of information for patients on this study.
Like most other centers, we are constantly working to improve our website. Our communications team has been through an extensive review of our site, has improved appearance and functionality, and continues to work to improve the accessibility and usefulness of the information available to the public.
Here again, reports suggest that cancer center websites may be sources of confusion rather than transparency.
A report in The Lancet Oncology describes a survey of websites of 62 NCI-designated clinical and comprehensive cancer centers. The purpose of the survey was to review the “tag lines” of these cancer centers and assess — in an admittedly subjective way — whether the emphasis of the tag line was on cure, cancer care or some hybrid of those two. Through social media platforms, researchers also assessed a survey of the donor pages of those corresponding cancer websites, again to determine whether the messaging of the donor pages was on cure, care or a hybrid.
There was an apparent disconnect between the tag line messaging and that on the donor page.
As an example, none of the eight cancer centers assessed as having a tag line focused on care maintained the same emphasis on their donor pages, where they were more likely to emphasize cure. Conversely, 10 of the 14 centers that emphasized cure in their tag line maintained that emphasis on their donor pages.
The issues of cancer center marketing are challenging at many levels, which I have highlighted in a previous editorial. The purpose here is not to question the motivation for the apparent disconnect between different pages of cancer center websites — this is most likely a consequence of the highly matrixed nature of cancer centers and the multiple contributors. The purpose is to point out that web-based technology — although for the most part an indispensable part of modern oncology care — can be a source of disparity, confusion and misunderstanding if we lose close attention to access and content.
We need to be sure that, as we work to reduce sources of disparity in cancer care, we don’t allow the adoption of digital platforms to create new ones.
George GC, et al. JCO Clin Cancer Inform. 2018;doi:10.1200/CCI.17.00030.
Hahn E, et al. Lancet Oncol. 2018;doi:10.1016/S1470-2045(18)30203-1.
Pho K, et el. JAMA Oncol. 2018;doi:10.1001/jamaoncol.2017.5257.
For more information:
John Sweetenham, MD, FRCP, FACP, is HemOnc Today’s Chief Medical Editor for Hematology. He also is senior director of clinical affairs and executive medical director of Huntsman Cancer Institute at The University of Utah. He can be reached at firstname.lastname@example.org.
Disclosure: Sweetenham reports no relevant financial disclosures.