5 mins with... SurvivorNet's Steve Alperin
What made you found SurvivorNet?
SurvivorNet is very personal for me and many on our team. When there was cancer in my family, we struggled to find the best care and figure out what to do. Throughout my life, I’ve encountered countless people and families that have experienced the same situation.
In 2004, we founded SurvivorNet to do something about it. We understand that most people just can’t make it to specialists like the ones we have on SurvivorNet. And they can’t afford to fly around the country getting second and third opinions. So we’re bringing the access and expertise to them while providing support and inspiration.
We’ve taken a very structured approach to creating next-generation resources for the cancer community - including healthcare professionals, patients and caregivers-by getting some of the best people on the planet to help us explain the standard of care and the points of difference. Fundamentally, we’re trying to empower and provide comfort to millions of families like mine and the folks of our team, and we try to do it better every day.
Who is it for?
Our primary audience is the country’s 18 million cancer survivors and the nearly 2 million people who will be newly diagnosed each year. In addition, we serve their caregivers, which is also an important audience. Part of our mission of education is to offer an aggressive cancer-only daily news service that inspires people with stories of hope, and also covers important topics around prevention and screening.
How can people access this content?
Everything is available without the friction of payments or registration. That said, for people who want specific information about their disease or their stage of survivorship, there are options to sign up to receive tailored content and email products.
How is the content curated?
Our core competency is taking complex information about health and cancer treatments and collaborating with leading physicians from around the country to explain the basics and nuances of these treatments.
We have a highly structured approach to content curation, which begins with following guidelines set forth by the National Comprehensive Cancer Network (NCCN) – the standard of care for the country and often what insurance pays for.
That’s the starting point for what I call our hardcore resources. So for breast cancer, lung cancer or non-Hodgkin lymphoma, for example, we have hundreds of pieces of content, much of it video, explaining topics, rather than a single page or two or three that people would normally find on the internet.
In addition, we collaborate with key opinion leaders in the health industry, and have a complex peer review process for all content that those collaborations yield. This is as close as you can get in a media product to scientific rigor, while also applying the craft and empathy of a team of professional storytellers, survivors and advocates inside SurvivorNet.
What does the streaming network provide?
SurvivorNetTV is the first and only linear TV network of any health information provider in the country. It started as a byproduct of our thousands of stories about people going through cancer.
Television is an extraordinarily good way to convey human drama. SNTV has now expanded into news magazines, full-scale feature-length documentaries, programming about sexuality and mental health, and soon we’ll be premiering our first high-profile fictional TV series as well – “The Big C” starring Laura Linney.
Nearly 2 million people a month watch SNTV, and we believe it’s a completely different way to help cancer patients through their journeys.
Could you tell us about SurvivorNet's online community?
Our community is made of people who have taken the time to tell their stories so that others might be helped. These initial stories have helped us grow. There is overwhelming evidence that cancer patients want to learn from other patients. There is measurable anxiety released when hearing from someone just ahead of you in their cancer journey.
It’s imperative that we come together to discuss the critical obstacles that prevent people in minority populations from accessing cancer care, engaging in basic preventive behaviours, and taking part in clinical trials.
In June we announced a collaboration with NYU Langone Health’s Perlmutter Cancer Center for “Close the Gap,” an essential new media vertical on SurvivorNet.com devoted exclusively to telling patient stories, providing expert medical counsel, and delivering vetted health information as it relates to the huge disparities that exist for racial minorities in healthcare.
Advances in health "must ensure self-sovereign identity"
The UK government has announced that from September onwards COVID-19 vaccine passports will be necessary to gain entry into places with large crowds, such as nightclubs.
This has reignited the debate between those who believe having proof of vaccinations will enable people to gather in public places and travel safely, and those who view the digital certificates as an attack on personal freedom.
The arguments have increased in intensity since the recent announcement to drop COVID-19 restrictions in England, in a move to reopen the economy that has attracted fierce criticism both domestically and overseas.
Cross-party ministers are set to defy the government’s latest plans to introduce vaccine passports over civil liberties concerns. A number of MPs have already signed the Big Brother Watch declaration against “Covid status certification to deny individuals access to general services, businesses or jobs” in recent months.
However Mark Shaw, CEO of Tento Applied Sciences, says the Big Brother Watch campaign is based on false assumptions. “Big Brother Watch puts forward a compelling argument based around civil liberties, but some of the assumptions they make are simply incorrect” he says.
“For example, the BBW campaign claims that all Covid passes are discriminatory, counterproductive and would lead to British citizens having to share personal health information with anyone in authority, from bouncers to bosses. However, there are already privacy-first digital wallets that give individuals the freedom to store and share anonymised medical documents, work credentials and other types of documentation quickly, simply, and securely.
“I wholeheartedly agree that individuals should not be required to share their own personal health information with unknown third parties or with anyone in authority who demands it" Shaw adds. "But I strongly disagree with the suggestion that ‘events and businesses are either safe to open for everyone, or no one’. It creates a false dichotomy that either everyone is safe, or nobody is safe. If employers or event organisers don’t take action to properly manage workplace or venue safety, then they risk curtailing the safety and freedom of movement for the majority."
The subject of personal health data is under scrutiny in the UK at the moment, following controversial plans for the NHS to share patient data with third parties. These have been put on hold following public criticism.
Meanwhile a new report has found that the majority of the British public is willing to embrace digital healthcare tools such as apps and digital therapies prescribed by a trusted healthcare professional.
Shaw adds: “The vital point to make is this: innovations in health technology must ensure self-sovereign identity. This means the data held about an individual is owned by the individual and stored on their device. And, in the case of medical data, that data can be delivered from healthcare professionals to the device in an encrypted format, and the user chooses how they share their information."