In 2014, there were an estimated 14,738,719 people living with cancer in the United States. Every year, about 1.7 million people are diagnosed with cancer. In only two decades, the way patients with cancer approach their diagnosis has changed in dramatic ways.
Perhaps the biggest factor in that revolution is access to the internet — and more useful health information and support communities on it.
As reported in a study done by Pew Research Center, in 2012 approximately 72 percent of Americans used the internet to seek health information.
People are also willing to share personal information with each other more than ever before. About 240 million (74 percent) Americans are active on Facebook, while 68 million use Twitter, where information — right or wrong — spreads like wildfire.
Cancer is a life-altering diagnosis. The serious news is often delivered with medical terms that patients don’t understand. They’re left craving more information: What does it mean? What are the treatment options? Who is the best clinical team for me?
It’s no wonder that many people newly diagnosed with cancer reach for laptops and smartphones on a quest for information and support.
A new Healthline survey of 1,500 cancer patients, survivors, and caregivers found that 89 percent of people diagnosed with cancer go online to search for information about their diagnosis. While there is a positive impact to having all that information at people’s disposal, there are also consequences and risks that patients must learn to navigate.
Medical advances also contribute to the large number of people diagnosed with cancer searching online.
Screening techniques have gotten better at detecting cancer in the early stages. Earlier and more effective treatment means more people are living with cancer longer, as well as dealing with the long-term side effects of treatment. Subsequently, “living with” cancer involves remission and possible recurrence — and thus the ongoing need for information.
Lauren Wallner, PhD, MPH, is a University of Michigan researcher who focuses on cancer care. “We’re shifting to a chronic model of cancer,” she told Healthline. “As curative medicine gets better, cancer patients live longer, and also experience the side effects, including the psychological issues with survivorship and the anxiety around financial toxicity. All of that makes cancer patients and survivors a very engaged population.”
People diagnosed with cancers such as breast, Hodgkin’s lymphoma, melanoma, prostate, and thyroid have higher five-year survival rates than other cancers, so these cancer-specific groups may be more engaged online.
As people are becoming more educated about health, they’re also asking more from doctors and healthcare in general. That said, the information available on the internet is a long way from replacing doctors as health educators. There’s no doubt that patients still need their health care team to learn about facets of their cancer that are specific to them.
This report combines several expert and patient interviews, our new Healthline survey, and existing scientific research to provide a detailed look into how different generations of people living with cancer are using the internet and online support communities to increase their confidence in treatment decisions, find emotional support, and make decisions with their cancer care team.
Key findings from the Healthline survey are:
- 89 percent of cancer patients and caregivers go online for information related to cancer.
- 49 percent of millennials go online for information the same day they receive a cancer diagnosis.
- 73 percent of millennials join an online cancer community after diagnosis — three times more than baby boomers do (23 percent).
- Emotional support is the no. 1 benefit of joining an online or in-person cancer support group, but millennials also report they’re valuable for helping them make treatment decisions.
- Millennials place a higher degree of trust in online resources than older generations.
- Half of millennials also feel the information they encounter online causes more anxiety and fear.
- 78 percent agree that the internet empowers cancer patients and caregivers to make more informed decisions and cope with fear and anxiety (71 percent).
- Boomers value their clinical care team more than Generation X or millennials do, but millennials are the most likely generation to prefer to defer to their clinical team to make treatment decisions (48 percent). 62 percent of boomers and Gen Xers prefer shared decision-making.
- About half of cancer survivors or their caregivers stay engaged in online support groups to track long-term side effects (64 percent), because they fear recurrence (49 percent), and for emotional support (47 percent).
- There’s a stark difference in the behavior of survivors by generation, with 59 percent of millennials, 51 percent of Gen Xers, and 37 percent of boomers staying engaged in groups.
Findings are based on a Healthline-commissioned survey conducted by Survey Sampling International of 1,500 people 18+ years old who were diagnosed with cancer (76 percent) or were caregivers (24 percent) to someone with cancer. There were 500 millennial, 500 Gen X, and 500 boomer participants. Sixty-five percent of all participants were diagnosed with cancer less than five years ago.
When asked to choose their most valuable resources during their cancer journey, 83 percent of survey participants named their clinical care team as a top resource. Next came health information sites such as Healthline or WebMD at 50 percent. Online cancer medical associations and organizations such as the American Cancer Society are favored by 49 percent, and cancer communities, both online and offline, were chosen by 40 percent.
Focusing on digital differences, most patients and caregivers go online for information about cancer, but millennials, 18–36 years old, are by far the most proactive. Healthline’s survey found that 49 percent hit the internet on the same day they were diagnosed. Within a week, 74 percent of all people had surfed the web.
And most are pleased with the result.
Seventy-eight percent of those surveyed said that information on the internet empowers cancer patients and caregivers to make better-informed decisions. They also said it helped them cope with fear and anxiety. Online research about cancer also prompted 61 percent of millennials, more than other generations, to seek a second opinion.
Patients across generations found the internet to be an important resource during all phases of their cancer experience. That includes gaining knowledge on the condition and prognosis (93 percent), learning about treatment side effects (86 percent), understanding diagnostic tests (83 percent), exploring treatment options (84 percent), learning what to expect after treatment (83 percent), and researching symptoms (78 percent).
The internet is proving to be a valuable tool in a variety of ways, such as getting past “doctor speak.”
Nola Agha is a breast cancer survivor who was diagnosed at the age of 35 in 2010. She said that the formal diagnosis can be scary, or even spark more questions when doctors speak in clinical terms.
“Those words are foreign. I didn’t understand them at all. You’re thrown into the deepest end of the deepest pool. I went online to try to understand what it was I was diagnosed with and to get some sense of what was going on,” she told Healthline.
Understanding the clinical lingo and being able to ask the right questions helps cancer patients in the decision-making process.
One survivor who is satisfied with her internet research is 53-year-old Paulette Stallone, who was diagnosed with stage 4 colorectal cancer in 2009. “Yes. Access to online information made me more confident in my treatment decisions,” she said. “110 percent.”
Information overload is a real problem for people diagnosed with cancer and caregivers.
Search for a certain type of cancer, and you’ll be met with an array of medical websites, advocacy sites, discussion boards, blogs, Facebook posts, and tweets. You’ll find everything from research studies to clinical trial information to tips on how to quell nausea.
How much do you need to know and when do you need to know it?
Half of millennials expressed anxiety and fear from the information they found, compared to 35 percent of Gen Xers, ages 37–52, and 25 percent of boomers, 53–71 years old, who did.
“The problem most patients faced in 1990 was that it was difficult to get medical information and connect with other patients,” said Dr. Wendy Harpham, a retired internist, lymphoma survivor, and author on survivorship.
“Now patients have the opposite problem. They’ve gone from scraping to find info to feeling overloaded,” she continued.
Even while the internet has made things easier, it often adds to the stress. For patients and caregivers trying to maintain jobs or take care of children during treatment, doing a proper online search takes time, and there’s precious little of that to spare.
“It was so time consuming to learn and read everything,” Agha noted.
“The way we gain knowledge has changed drastically,” explained Dr. Bhavesh Balar, an oncologist at CentraState in New Jersey. “Even doctors don’t open textbooks anymore. Patients have access to that clinical/scientific information as well. Sometimes it’s challenging to navigate patients through all that information.”
Dr. Maurie Markman, president of medicine and science at Cancer Treatment Centers of America (CTCA), said that “while direct patient input into therapeutic decision-making, including questions from internet searches, is to be strongly encouraged, the magnitude of information available can be truly overwhelming and the quality of much of the data available from online searches is potentially quite problematic.”
He also noted that not all research is actionable. “Even when the material is clinically relevant and a potential therapeutic option, there may be concerns with an individual insurer agreeing to pay for an off-label anti-neoplastic agent or a novel treatment strategy,” Markman explained.
There are also several pharmaceutical websites for cancer treatment drugs or medications that may help manage side effects. While some of these pharma sites offer good information in addition to info on the drug they’re selling, the number of pharma websites adds to the noise that patients have to sift through.
It has the potential to become overwhelming, but many advocates say the information is needed and important.
“It seems like there’s constant conversation around breast cancer, but a recent survey by Breastcancer.org showed patients don’t know as much as we think. We’re lulled into a false confidence,” said Pamela Green, director of marketing for nonprofit organization Breastcancer.org.
Clearly, most people don’t have a background in healthcare or, specifically, cancer. That makes it difficult for many to grasp the complexities of all the information available, some of which is conflicting. Plus, the internet has its fair share of questionable or bad health advice.
“Where the trouble comes is when patients can’t distinguish sound info and junk medicine that’s leading them astray. It gets in the way of optimizing their care,” said Harpham.
Only about 38 percent of those surveyed said they trust the cancer information they find on the internet always or frequently, with millennials being the most trusting.
“People used to have mistrust in the internet. Now it’s a source of validation, confidence, and empowerment,” Green said.
Stacey Tinianov was caregiver to her mom, who had breast cancer, before becoming a cancer patient herself. Now a patient advocate, she stays engaged online, especially on Twitter.
“It’s important to quickly figure out what’s real and what’s hullabaloo. The community helps with that,” she said, noting that survivors who aim to “pay it forward” are especially helpful in revealing some information as snake oil.
If it takes a community, then groups like Breakthrough Crew are an integral part of that. Comprised of patients, caregivers, advocates, and healthcare professionals, the group takes to social media to debunk myths about clinical trials and to encourage people to use trusted sources for information.
“Clearly, there’s a theoretical risk [in access to information, sometimes unverified], but with any source of information, you want to understand the source of evidence underlying that information,” Ben Heywood, co-founder and president of PatientsLikeMe, told Healthline.
There are even treatment algorithm guidelines available online where you can punch in your information, including your age, stage, and the genetics of the tumor, and the website delivers a personalized treatment recommendation. This comes with potential risks of its own.
Along with private and public Facebook groups, Inspire, PatientsLikeMe, Breastcancer.org, Association of Cancer Online Resources (ACOR), American Cancer Society tools including Cancer Survivors Network, and Smart Patients are just a small sampling of online support groups that are allowing people with cancer to connect with other patients going through similar treatment regimens, diagnosis, and experiences.
There is a distinction between social media groups and communities. Communities are secure places where people create verified profiles and control how their data is shared, and conversations are moderated. Cancer-specific social media groups are usually less private and controlled.
About 48 percent of patients and caregivers responding to our survey joined an online cancer support group after diagnosis. Millennials are three times more likely to join an online support group than baby boomers (73 percent vs. 23 percent).
Cancer is an all-encompassing illness, affecting virtually every area of a person’s life. Managing the family, work, social, and financial realities can take an emotional toll. For some people, cancer support groups help ease that toll.
Eighty-six percent of survey respondents report that a cancer support group (online or in person) had a positive impact on their cancer experience. Eighty-six percent cited emotional support as the primary benefit. Millennials found the support groups especially valuable for making treatment decisions (78 percent).
Published studies have also found cancer patients report that online communities lead to significant emotional benefits. A
Online support groups also help provide members with pride about their coping skills, empowerment, and a sense of hope for the future according to a
Agha added that it’s important to know that somebody understands you. “People who’ve gone through it are the only ones that understand. You often can’t put into words yourself why you’re feeling so awful.”
There’s an abundance of groups divided by cancer type, treatment protocols, timelines for chemotherapy, and other considerations. There’s no one-size-fits-all group, so finding a match for one’s diagnosis and values is the real power of online patient communities.
Marcia Holman is a former nurse who was diagnosed with multiple myeloma in 1991, then developed breast cancer. She’s currently in treatment for multiple myeloma recurrence.
“I love PatientsLikeMe and I’ve become very active in the multiple myeloma group. I post about what’s happened that day and how I’m feeling — good and bad. I share when my granddaughter comes over and we do something or give updates on how the flowers in my garden are doing. There’s more to our lives [than] just being sick with multiple myeloma. I think it encourages us to go out and participate in life and see the good parts too,” Holman shared with Healthline.
“The community is very encouraging and uplifting. We cry when someone relapses or we lose one of them to multiple myeloma. Online they’re like family to us,” she added.
Both patients and caregivers share the latest research, what treatments they’ve tried, side effects they’re experiencing, and tips for how to deal with them.
“These patients are thirsty for information and they welcome their doctor’s guidance and opinions as well,” shared Brian Loew, the founder and CEO of the online health community Inspire.
“Cancer is a disease that has a ton of intensity about it. It can be fatal, so getting a cancer diagnosis feels like an alarm is going off. There’s a real urgency to patient and caregiver conversations in our cancer communities. If they want to learn, they’re trying to learn quickly,” Loew said about Inspire.
According to the Healthline survey, over half (57 percent) of respondents join online or offline cancer groups to share clinical experiences and to get answers to medical questions (46 percent).
Of the people surveyed, 8 in 10 agree that cancer support groups, including social media, forums, and online communities, help patients and caregivers make informed decisions. In fact, group participation inspired 58 percent of survey respondents to seek a second opinion — millennials most likely of all (65 percent).
In addition, cancer support groups were very important or essential for helping 68 percent of survey participants make treatment decisions, 68 percent learn about new drugs therapies and clinical trials, 62 percent choose their hospital, and 54 percent choose their clinical cancer team.
Tinianov used a cancer-specific hashtag on Twitter to explore information about diagnostic testing. When her doctor’s treatment plan didn’t mesh with best practice, she got a second opinion, a decision that changed the course of her treatment.
“Without social media, I absolutely would have had different treatment, and potentially different long-term effects,” the 44-year old said.
More than any other generation, millennials gained more confidence to make informed decisions through support groups. But there’s a flip side. Almost half said the support communities also added to their fear and anxiety, according to the Healthline survey.
All cancers are not alike. Even within a specific type of cancer, there are a lot of subtypes. Type, stage, and tumor grade all affect the kinds of treatments and side effects a patient is likely to have. That’s why most people want to connect with others who have a similar type of cancer or treatment plan.
Age, language, and family situation may be factors in the type of group that can do patients the most good. Similarities can help patients and caregivers learn more, have more effective conversations, and formulate questions for their doctor.
“If there’s a particular issue my oncologist says isn’t a side effect, I can go to the breast cancer community and ask if people with the same protocol experienced side effects. Then I can take the results back to him and say: It’s not listed as a side effect, but here are 11 women who also think it’s a side effect. That support and dialogue lets me communicate at a higher level with my doctor,” explained Tinianov.
PatientsLikeMe noted that many patients use these tools to track side effects, symptoms, and progress over time. Some patients may share that data with their community, or they might bring it to the doctor’s office to inform the checkup. Fifty-nine percent of PatientsLikeMe community members reported that recording their symptoms on the site helped them manage their symptoms.
Not everyone uses these communities the same way. In addition to diagnosis and treatment, age, background, and personal coping strategies and values play a role in how people engage.
PatientsLikeMe notes that they have a variety of user types. Some want only to listen in on the conversation. Some want to track their physical symptoms to understand their disease at deeper level. And others are active helpers who engage regularly and lead the community in a supportive way.
A user may start out engaging one way and evolve along with their cancer treatment. From diagnosis to treatment and beyond, there are key points when patients seem to have the greatest need.
“In my experience, people tend to be less involved over time. The neediest time is right after they’re diagnosed, [because they are] less capable of knowing where to find help, support, or info,” said Agha.
She explained that the end of primary treatment is another major time of need.
“There’s a bit of a shock as you re-enter the real world, and it can be tough to reach out to people who think you’re cured. Once people feel confident they’re going to make it, they move away from online communities,” she continued.
Boomers entered the world between 1946 and 1964, coming of age before the internet and reality TV and an explosion of talk shows on intensely personal topics. Certain issues weren’t openly discussed in a public setting, and there was great expectation of personal privacy, especially in matters of health.
Contrast that with millennials, who were born between 1982 and 1999. Most didn’t graduate from high school before experiencing the surge of internet access and tell-all TV. Younger millennials have had starring roles in their parents’ Facebook pages for most of their lives and may have different ideas about privacy.
It’s not too surprising, then, that while millennials place a high value on online cancer community support, boomers still put the premium on privacy. Wishing to protect that privacy makes them somewhat reluctant to go all in.
A full 69 percent of boomers in the Healthline survey said their personal information is a private matter for them, their loved ones, and their doctors. Contrast that with only 47 percent of Gen Xers and 31 percent of millennials who feel the same way.
Boomers may be more inclined to go it alone or to rely on a small, familiar group.
On the issue of whether it’s important to connect with others to share information and emotional support, only 31 percent of boomers say it is. That’s a far cry from the 53 percent of Gen Xers and 69 percent of millennials who agree.
People living with cancer have a lot to deal with, but they’re not unconcerned for the people who love them and share the load.
According to a recent study presented at the 2017 European Society for Medical Oncology (ESMO) conference, one of the top concerns of people undergoing chemotherapy is the effect it has on loved ones. Cancer patients do worry about the burdens placed on partners and family members, which makes it difficult to speak freely at times.
One benefit of some online groups is the ability to say what you’re feeling without holding back.
“Some people love the community for the anonymity of it. It allows them to get the peer support without having to share with their family. You can have that vulnerable moment without editing yourself,” said Green.
“When you need to talk, express yourself, or need someone to make you feel like you’re not alone, the community is there. When I was up pacing at 4 a.m., there was someone to receive me and validate me. I didn’t need to wake up my husband,” she explained.
Similar to online support communities, the more specific to a patient’s personal diagnosis, the more powerful a social media group can be. There are several popular groups for a wide range of specific cancers.
The Healthline survey found that 61 percent of millennials joined a cancer-specific public Facebook group after diagnosis, five times the rate of boomers (12 percent), and considerably more than Gen Xers (34 percent). Many valuable cancer-related Facebook groups are private and were slightly more popular overall with survey respondents than public pages. Again, millennials (66 percent) were the most likely by far to join a private Facebook group.
Facebook is a powerful platform, according to
Less specific but trusted Facebook groups, such as those monitored by the American Cancer Society and The Cancer Connection, provide a steady stream of information and opportunity for discussion for people with cancer and their families.
Social networking sites also use hashtags, such as #oncology or #cancer, that allow people to find information.
On Twitter, hashtags are used for dedicated chats as well. Chats are conversations among a group of people, usually held on a set day and time of the week, with one or two people acting as moderators. Later, anyone can use the hashtag again to revisit the conversation.
These are some of the more popular Twitter cancer chats:
- #bccww: breast cancer chat worldwide
- #bcsm: breast cancer social media
- #btsm: brain tumor social media
- #lccaregiverchat: lung cancer caregiver
- #lcsm: lung cancer social media
- #pancsm: pancreatic cancer social media
Even with all the information and communication available online, many patients prefer to defer to their doctor on cancer treatment decisions.
Forty-one percent of those surveyed by Healthline fell into this group, saying they relied exclusively on their oncologist or cancer care team to make treatment decisions.
Fifty-nine percent approached it another way, saying they took part in a shared decision-making process along with their doctors.
“The population that’s not interested in learning (the patient profile that defers to doctor) is growing smaller. People who want to know about their diagnosis and treatment options are growing with social media and electronic medical records (EMR),” explained Balar.
Boomers tend to place greater value on the traditional care team than other generations (88 percent vs. 78 percent of millennials). Millennials are more enthusiastic about collecting as much information on the internet as possible and more likely to find online cancer communities to be essential and extremely empowering.
Although millennials are embracing online information and support groups more than other generations, they’re less likely to take part in shared decision-making than older cancer patients or caregivers, according to the Healthline survey. Boomers and Gen Xers are both more likely to be involved in the decision-making process with their doctors than millennials (62 percent vs. 52 percent, respectively).
The silent generation, 72–92 years old, favors shared decision-making, too, according to a
Loew clarified that shared decision-makers “are not saying ‘I’m smarter than my doctor.’ What they’re saying is ‘I want my voice to be part of that conversation.’”
Perhaps one explanation for these generational differences is that older patients may have had other health issues or have seen loved ones through health issues. Those experiences may make them more comfortable in taking a bigger role in their own care. It could also be that younger millennials rely on parents to help guide them.
In addition, it’s possible that people in online support groups tend to be more active. According to an Inspire study across all groups, 69 percent of members say they share equal responsibilities with their physician in the treatment decision-making process, while 10 percent report they’re guided largely by their doctors.
As for patients who want to rely on their doctor, there’s still opportunity for inclusion.
“There is an important and ongoing role for them in their care. How do you stand by and empower the patient who is more the type to defer to a doctor? You can give them nuggets little by little that don’t overwhelm,” Green continued.
Harpham believes that shared decision-making benefits everybody. Patients feel better when they’re more informed and part of the process. Doctors certainly need patients who understand a treatment plan and will follow it.
“Preferred patient roles span a spectrum. On one end people want to master the technical information and be nearly equal in making the decision with [the] physician. I say nearly equal because it’s always the patient that makes the decision and experiences the consequences,” Harpham explained.
“At the other end of the spectrum people want their doctors to make all the decisions. That’s fine, as long as you learn a minimum to communicate with your doctors, articulate your questions, and help them care for you. Between office visits, patients need to learn how to recognize warning signs between office visits and report them,” Harpham said.
Patient knowledge builds confidence in treatment decisions.
Said Holman, “I feel confident in my treatment decisions and like [that] I know more than the average person does. It gives you a feeling of control and that’s what a lot of patients lack. They go into this and haven’t even heard of this disease, and don’t know anything except what the doctor has told them in 20 minutes. Patients need to feel like they’re a partner in their healthcare.”
We’ve come a long way since Holman’s first diagnosis in 1991.
“[There] wasn’t much information on the internet and what was out there was pretty scary.”
There are also many people and groups in the patient and medical communities, such as the organization Goals of Care, advocating for honoring patients’ values or goals in the treatment plan.
“Physicians can offer the best treatment recommendations only after knowing what patients value and need,” Harpham stated.
Also, opportunities for shared decision-making need to be improved. A
Patients are having more informed discussions about their own healthcare with physicians. It’s a new order that doctors find both helpful and challenging.
“It’s a very hard thing for doctors to be able to keep up with what their patients find on the internet. But at the same time, there’s no returning to the way it was before,” Loew said. “Everyone in the healthcare system has to be prepared for patients who want to learn about their conditions deeply.”
But we’re not quite there yet, and doctors see both the pros and cons. Informed patients are often helpful, but they also ask more questions, which take more time to answer. However smart and important these questions are, they surely take up more of an oncologist’s time.
Research in the Journal of Oncology Practice found that shared decision-making with a focus on patient-centered oncology care can place an added burden on an oncologist’s time partially because the treatment of cancer is becoming more challenging and disease management decisions are increasing complex.
Interestingly, the study also shows that cancer patients often don’t understand the health decisions that need to made or the complexity of the issues around their disease, which puts more of a time burden on physicians, as well.
“I think it [research] is a good thing in the right setting,” said Balar. “There are situations where I wish the patients didn’t question too much (about the plan of action/diagnosis). Sometimes simple things are made much more complicated, and their stress level increases.”
What starts off as a simple idea to Google medical terms or side effects can quickly get out of hand. You never know what’s going to pop up, if it’s an answer that really pertains to you, or if that information can be trusted at all. Doctors are now in the position of having to guide patients to good information.
Balar directs patients to websites depending on their questions, and he does advise caution. “It’s great to know more about your diagnosis, great to learn everything if that’s what the patient wants to do. But not everything that they’re reading applies to them. I tell them that if they have questions or something scares them, to write it down and ask me to clarify.”
On the other hand, he suggests that doctors also need to accept rapidly changing technology.
“That means we have to be able to take more time to answer our patients’ questions. They test our knowledge and our ability to go and explore the answers to questions we haven’t even thought of. Many older physicians are retiring because they can’t keep up with this. People have way more questions than ever before. Some doctors are facing difficulty providing care to the patients” who have several in-depth questions, he explained.
Holman believes that patients are changing the medical community.
“Before, patients went to the doctor and said ‘fix me.’ Now patients want to know, want to be informed. They’re asking: What are the side effects? What’s going to happen? How is this going to work? Before, it was blind trust.”
A University of Michigan
Although the focus wasn’t specific to online activities, another
First Descents (FD) is an outdoor adventure program for cancer survivors 18–39 years old. The goal of the group is to help young adults build confidence and connect with other survivors.
FD executive director Ryan O’Donoghue explained that since younger adults undergo treatment when they’re early in their careers or even still in school, they often have a tough time transitioning back into the formative phases of life as survivors.
FD is there to help with this transition — outside of a hospital setting.
Another major factor in improving health outcomes is enhancing doctor-patient communication with information. Where doctors might have previously suggested keeping a journal of symptoms, patients can now use health apps and online tracking tools, like those on PatientsLikeMe and Inspire, for more precise tracking.
Along with his colleagues, Dr. Ethan M. Basch, professor of medicine at the Lineberger Comprehensive Cancer Center of the University of North Carolina, studied the impact of self-reporting software during cancer treatment. They found that a self-reporting tool for patients, shared with doctors, significantly improved communication on symptoms and side effects and helped the cancer patient be more aligned with the healthcare team, potentially improving outcomes.
We’re in the midst of a move toward better medicine and care.
“One of our promises to our community [PatientsLikeMe] isn’t just for the personal value (direct benefit to individuals), but our mission to use the info to advance patient-centered care initiatives,” said Heywood.
It’s a similar proposition as Inspire, which has several dozen online cancer-focused communities for patients and caregivers to choose from. Inspire aims to advance medical progress by connecting patients to pharmaceutical companies for clinical trials or to provide feedback for trial design. Inspire also taps into its network to gather insights about patient populations.
PatientsLikeMe is also collaborating with the U.S. Food and Drug Administration (FDA) to review patient-generated data for insights into the potential side effects of drugs in the real world.
These are just some of the ways online patient communities are pushing U.S. healthcare to be more patient-centric.
The cancer experience doesn’t end when patients reach the end of treatment. It takes time to recover and gain physical strength. Some patients have an ongoing need for medications and longer-term treatments, plus follow-up testing to check for recurrence.
That leaves many patients with lingering physical and emotional issues to contend with. So, while some people disengage with their online communities when they’re in remission, others remain involved.
The Healthline survey showed that 47 percent of people continued to stay engaged online after treatment was complete. There’s a significant generational difference, with 59 percent of millennials, 51 percent of Gen Xers, and 37 percent of boomers staying engaged in groups.
Sixty-four percent of participants named the long-term side effects of treatment as their most pressing ongoing concern, while 49 percent named fear of recurrence.
“Women tend to be quite worried about their cancer coming back, even women who were very early stage, and it seems to be persistent through survivorship,” said Wallner of breast cancer survivors. Their caregivers and partners worry about recurrence too.
Although there are only a few studies that explore how women and men approach survivor identities, one
Green added, “Post-chemo or post-treatment still isn’t easy physically. The medicine is very hard to take,” since people living with breast cancer are on estrogen therapy for long time, experience debilitating side effects, and undergo surgery.
Many members stay connected with the community to share and get tips for relieving pain or other side effects from medications.
“In that way, the community is helping with outcomes by helping people manage side effects so that they can continue taking their medications and avoid recurrence,” said Green.
Of course, some remain to share their experiences for the benefit of others. In the Healthline survey, 47 percent of respondents said they continued their online activities for the emotional support, while 38 percent said they were doing it to pay it forward.
Heywood reports that PatientsLikeMe users find tremendous value in paying it forward.
Tinianov is still quite active in Twitter and Facebook communities and recently dove into Instagram.
“I feel like I can give back. Every study and mainstream media piece that goes out doesn’t call out the relevant aspects. I engage by pulling out very deep research and translating it — sharing how it’s relevant to the community. You feel a desire and need to give back to that same community that supported you. A lot of us remain involved to continue to learn and are able to ping that community and confirm that, yep you’re normal.”
Surviving cancer doesn’t mean you’ve survived unscathed.
The financial burden of cancer treatment can linger for years. Medical bills, with or without health insurance, can add up. Then there are nonmedical bills relating to cancer, such as transportation, child care, and household accommodations. And cancer often cuts into time on the job.
Survivors often need help managing the stresses of surviving cancer.
“I am more active during survivorship. I was scared during treatment so I shied away from information sometimes and negative forums, and I was able to become more social after,” said Stallone.
It’s clear that people with cancer and their caregivers find value in a number of ways online. While each patient is different, there’s every indication that education, mutual support, and a social component all contribute to that experience.
“What we see happening already will only accelerate. In the future, patients will be able to synthesize multiple levels of information through online communities — from importing EMR and genetic information to conversations patients are having with other patients and caregivers. That will be a part of your treatment decision,” Loew said.
In addition to online cancer communities, patients can make use of other technologies, such as dedicated health apps and even virtual one-on-one doctor consultations. Not to mention in-person support groups and patient advocates in the community.
“We’re at a unique inflection point in cancer care, moving from an acute to a chronic disease,” Heywood predicted. “The journey of the patient will be increasingly similar to chronic care.”
Information will also become more targeted and relevant to each individual. “We’re moving toward categorizing patients in survivorship: relapsing, chronic, acute across each cancer. We’ll be able to better target their care to their needs,” said Wallner.
This will become even more important in coming years, as the number of cancer survivors is predicted to increase to 20.3 million by 2026, up from 15.5 million in 2016.
Information about generational differences between people with cancer and their personal care goals will also help hospitals, healthcare providers, and pharma companies better personalize information and reach patients.
Armed with information, patients now have a choice in what type of decision-making relationship they want to have with their oncologist. Patients and caregivers are increasingly partnering with doctors in the drive toward more patient-centered care.
The digital influence in care is definitely leaving its mark.
Still, more work needs to be done to help physicians, academics, and pharmaceutical companies understand the patient journey. As we travel down this path, online content and cancer groups will continue to be an integral part of patients’ cancer experience. As cancer care moves toward precision medicine, online content will also become more personalized to meet people wherever they are on their journey.