Technology vs Cancer:
Can Digital Health support those worried they may have cancer?
Have you ever worried that you’re ill?
That you may have the flu?
Sinusitis?
A viral infection?
What about cancer?
This is the fear paralyzing thousands of people every day.
This fear may start with…:
- a lump in the body
- a persistent cough
- a strange-looking mole
- blood in the toilet bowl
- pain (that could be dull, sharp or burning)
- skin discoloration
…or a number of other signs.
Can technology help those worried about cancer? What can be done to support decision-making? Can digital tools make the path to a cancer diagnosis less burdensome?
Technology along the journey to a cancer diagnosis
People will always get cancer. I probably have cancerous cells in my body right at this very moment — just not enough to form a tumor (or so I hope).
Helping those worried about cancer through technology is becoming important, because:
- It no secret that people already search for health-related information online. Actually, middle-of-the-night searches for symptom are not uncommon. It turns out that, when the question is “could it be cancer?”, everything else can wait (including that post on social media).
- Healthcare systems are over-stretched: as more people decide to visit a healthcare professional to deal with their fear, systems become less functional. In some extreme cases, the system starts undermining its own goals. For example, it was recently reported in the UK that GP practices had been offered rewards for not referring patients to hospitals. People can spend weeks waiting in agony for an answer, while in some countries, fragmentation of care leads to frustration. And none of these are good if you are worried you may have cancer.
- Cancer is now an undeniable part of our society. Famous people get it. Past Presidents get it. Celebrities get it. Neighbors get it. In the UK alone, 2.5 million people are estimated to be living with cancer; if that’s not enough, half of those living today are expected to get cancer at some point in their lives.
- Psychology, and fear of the unknown play strange games in our fast moving world. Even if we have been thinking that “it will not happen to me”, the slightest sign or symptom may switch this to “I can’t believe it is happening to me”.
A Digital Health approach
Sometimes, when you have a hammer, everything looks like a nail.
However, it is important to realize that technology is not the one and only answer. Most of us tend to oversimplify healthcare, to design for the average person and the average situation, and to extrapolate our own situation and preferences.
Therefore, it is critical to balance the application of technology in this case. This includes signposting, triaging, and managing expectations. Moreover, it is important to design for those whose agony is leading them into dark corners, even in the middle of the night.
Personas
The individuals worried about cancer and using technology for guidance (or even self-diagnosis) do not belong to a single category. Building personas is a necessary part of the service design process.
Let’s look into a few relevant “personas” below:
- The hypochondriac: we all know them (or look at them in the mirror every day). They have enviable attention to detail, which leads them to believe they are infected, sick, or dying. Technology must acknowledge this kind of thinking, but not fuel it. This is where most of the online resources fail, as symptomatology cannot be precise, complete or exclusive. The goal here is to manage expectations and clarify that properly analyzing and evaluating signs and symptoms requires a process, and comes with no easy answers.
- The close relative: when a loved one suffers, we suffer too. Caregivers may get overwhelmed whenever something leads to a suspicion of disease. In this case, common sense may fail us. Any service aiming to help those worried about signs and symptoms should highlight that no two cases are identical, as well as carefully explain the genetic or familial aspects of certain conditions.
- The one always on alert: how many times have you heard or read about risk factors, warning signs, or other tidbits that make you worry you are unhealthy? There are hundreds of new research pieces coming out daily that can drive even the most composed citizen absolutely nuts. The goal of a service catering to this audience must help put “news” in the right context, without taking away their thirst for knowledge.
- The one who just want to make sure: Something has been bugging them for a while, but they have been putting off looking into it for any number of reasons. Their quest is one for confirmation that they are just overreacting. This one’s “easy”! But what if they are not — and they need to delve further? Balance is again the key word: Self-diagnosis has its merits but working with an expert is irreplaceable.
Information
A service to explain signs and symptoms is predominantly an information-based service. Fear of cancer may be fueled by any number of things, but its best ally is lack of adequate information, or the misinterpretation of the existing information.
As a consequence, such a service should help the worried ones
- understand that cancer is a simple word for a set of hundreds of conditions
- identify what cancer is, in simple terms
- dispel myths about cancer, its signs and symptoms, or risk factors
- prepare to guide themselves through the maze of tests, potential diagnoses, and their implications.
Furthermore, should this trigger the beginning of a journey towards cancer diagnosis, it is important to help manage expectations. This journey is not easy, simple, or painless. And while most of us are familiar with the concepts of chemotherapy, surgery, radiation therapy and other necessary evils, the almost-universal truth is that cancer is a rollercoaster ride.
Moreover, one cannot emphasize enough the importance of the psychosocial side of cancer. Isolation, fear, depression and anxiety are not uncommon; knowing that they can be part of the journey is not reassuring by any means, but it is important to know that they do happen and that there are ways to ameliorate their impact.
The right tools
Technology sometimes feels like a garage full of tools, inviting us to experiment with them. While the capabilities in healthcare are endless, the public’s best interest demands a balanced approach.
Consider these tools:
Symptom checker: Imagine a way to enter your symptoms and getting a diagnosis. It sounds simple: you would just need to pick out of a list of possible symptoms, and your diagnosis would be one click away. Well, there are reasons that doctors are not all that concerned about being replaced by a machine to diagnose cancer: it is more complicated than that. Not only is cancer a term “hiding” multiple conditions, it can also be hard to diagnose. There are countless stories of patients who had to reach out to multiple specialists before getting the right diagnosis. This may be due to unclear symptoms, unclear imaging or biopsy outcomes, human errors and other reasons. As with any application of technology, it is critical to identify which problem it is solving: until (if?) diagnosis becomes completely automated, a symptom checker must:
- Help patients understand their own symptoms
- Rule out any conditions as applicable
- Guide them to the right kind of expertise (e.g. gynecologist vs medical oncologist)
- Instill the right sense of urgency (which is often misunderstood by those worried: cancer generally evolves slowly).
Genetic risk assessment: Substantial research is being conducted to understand the genetic causes of cancer — and much more is still necessary. To date, some specific genetic predisposition syndromes have been identified, including those leading to breast and ovarian cancer, as well as colorectal cancer. Overall, about 5–10% of cancer cases are due to an inherited gene mutation. A genetic risk assessment based on scientific guidelines can help identify high familial risk of cancer. It is important to note that such a tool does not diagnose cancer but performs the (very important) task of risk stratification. On the other hand, a careful and well-rounded implementation can really assist high-risk individuals during the next steps.
This means helping them:
- realize what “high-risk” and “normal risk” means, and what is behind their individual case
- understand that there are specific tests available to further validate any risk stratification
- become familiar with some of the available options in case these tests indicate a genetic mutation (and realize that doing nothing is an option, too)
- identify and collect the necessary documents and family history
- prepare to share these with a cancer genetic counselor, in order to thoroughly discuss their individual case and the best next steps.
Epidemiology report: Epidemiology breaks down medical conditions into patterns, statistics and other data points. It is the branch of medicine which reveals that, for instance, men are most vulnerable to testicular cancer in the age bracket of 40–44, or that Latvia has the highest incidence rate of ovarian cancer. While such high-level statistics can be almost dangerous if applied blindly to an individual case, they do have a place in guiding screening procedures, and calming the inner voice which can drive some people paranoid at the slightest sign of cancer. Therefore, such a report can “translate” generic epidemiological data into specific relative risk based on demographic data.
Finding “the right Doctor”: When all is said and done, the need to find and facilitate an appointment with a medical professional is crucial. Such a service can help identify the right professionals based on various criteria — as many such platforms are already doing. Criteria include location, reviews, board certification, insurance companies, professional affiliations, etc.
Such a tool will be even more helpful if it can help gather the right information and documents (from lab tests to personal and family health history to the timeline of symptoms and signs). In case it can be integrated with doctors’ workflows, it could even help them prepare for the appointment by guiding them to do some “homework” in advance — staying on alert for possible misdiagnoses or learning about additional data that could be necessary. This is particularly important in suspected cases of rare cancers, or when referral documentation must be shared between healthcare professionals.
No easy answers
There are two kinds of technological breakthroughs: the ones that give you the answer, and the ones that show you the way to the answer.
In most cancer cases, technology is not ready to give an outright answer. But we are very close to helping those who are worried through the maze of information and decisions.
At the end of the day, the best way to treat cancer is to diagnose it early; and while the statistics are not on humanity’s side, technology can help make up the lost ground.
