There are few moments in life more devastating than being informed that you or a loved one has a potentially fatal disease. Boaz Gaon, playwright and former journalist, recalls the sense of befuddlement that he and his family experienced as they accompanied his late father through three different diagnoses of cancer. Benny Gaon, business magnate and philanthropist, lost his battle with cancer in 2008. Ironically, the elder Gaon first learned of his cancer diagnosis two years into his term as president of the Israel Cancer Association. “We thought that would help us make better decisions, because we had access to the best doctors, the best hospitals and research,” says his son. Although medical treatment was the best available, the family felt ill-equipped to cope with the non-clinical aspects of caring for their father. They struggled with how to deal with financial, emotional and logistical issues; whether to move or change something in the house; how to cope with the side effects of various treatments, insurance and time off from the place of work. “We had a million questions that no one addressed,” says Gaon. “Almost daily, we battled with decisions that needed to be made, and we made a lot of mistakes. We wanted to reach out to what we call wisdom – the things that people know because they've been there. But this wisdom, or experience-based knowledge, wasn't accessible to us in a way that would help us as a family make better decisions.” The realization that wisdom needs to be structured and be available to people when they need it, led to the formation of Wisdo, a Web platform in which people who have had or are currently undergoing a life-changing experience can share their accumulated wisdom. Not by chance, Gaon's co-founders, Arik Gilon (a co-founder of the satellite navigation app Waze), Ido Engel and Arie Gofer, all have more than a passing acquaintance with cancer and the terrible toll it can take on family life. The four met twice a week for months before deciding to adopt the crowdsourcing model that had proven so successful with Waze. Wisdo's debut venture focuses on breast cancer and consists of insights contributed by breast-cancer patients, survivors, caregivers and family members. The insights cover the whole gamut of the breast cancer experience from the practical to the emotional to the philosophical, chronicling the patient's journey from the first days following diagnosis to post-treatment and beyond. They address any and every issue – including body image, sexual relations, telling family and friends, work issues – that a breast-cancer patient could possibly encounter. “We decided to start with breast cancer because this is a very committed, interconnected community,” explains Gaon. “We could see from Facebook and Twitter an endless sea of wisdom bubbling, but no one was capturing that wisdom and making it accessible.” Gaon spent four months in the US, visiting hospitals, support groups, medical insurance people, doctors and caregivers. He talked to patients, doctors, survivors, family members, and especially nurses. “Nurses do a very valuable job,” says Gaon. “Not only do they have an exceptional understanding of the medical and emotional aspects of being a breast cancer patient, but their natural inclination is to help people.” Gaon asked the nurses to map the most recurrent and dramatic events that are part of the breast-cancer experience. “They helped us build a list of about 50 steps that represent the critical junctures of the breast-cancer journey – a list that now consists of almost 180 steps, or milestones – and we thought that it was interesting that most focused on non-clinical events in the life of breast-cancer patients. “We then showed the list to members of the breast cancer community and asked them to share their insights, assign them to specific milestones and then specify the optimal time at which to make that insight available to a patient or family member.” In just over a month, Gaon was able to build a map of the breast-cancer experience that was curated, moderated and organized by the breast-cancer community itself. “That's when we felt that our initial vision of optimizing the way people navigate through an illness such as breast cancer was validated,” he says. Wisdo differs from other websites on the Internet, where endless information is available so long as you can articulate the question sufficiently well for the search engine to respond with appropriate results. But what if you don't know what question to ask? “Wisdo identifies when a breast-cancer patient is at a certain point on her journey and sends her the information, guidance or just supportive statements from community members that are sensitive to where she is on the health continuum time line,” explains Gaon. “Wisdo is telling you what you need to know when you need to know it.” Patients facing their first chemotherapy treatment, for example, receive insights from those who learned from going through the process themselves how best to deal with mouth sores or dehydration, and offer tips on useful items to take with them to their chemo sessions. During the later stages of chemo, the breast-cancer patient will receive wisdom on how to deal with their hair growing back differently than it had been. Some insights focus solely on the practical, such as shopping for foods that provide nausea relief, while others offer wisdom on strengthening relationships during this potentially disruptive period. There is an insightful look at family members, who are frequently ignored, but who also require support. Patients are enjoined to recall that they are more than their cancer and are given compelling reasons to ignore statistics. In some insights, the humor shines through, as does the generosity of those who reach out to share with others the wisdom they acquired through their own personal journey. “When you're coping with a serious illness, you're constantly busy with the now,” Gaon stresses. “You're in a perpetual mode of crisis- solving and part of this feeling of an ongoing crisis is that you don't know what is coming your way. We think that if we can say 'you're here, but you're about to be there,' that could be a huge stress reliever. We also allow people to explore what could happen to them. For example, a breast cancer patient who is facing a mastectomy without chemo might be interested in learning about chemo, because she's part of this community.” Gaon attributes the profound engagement of the breast-cancer community in Wisdo to the fact that they are wounded healers, a concept coined by Carl Jung to describe how people who have been traumatized attempt to self-heal by healing others. The term could possibly be ascribed to Gaon himself, whose distress during and following his father's illness is a major impetus in Wisdo's founding. “I think about my dad daily,” he says. “There's something therapeutic in translating frustration into action, in trying to solve something in the world. In that sense, Wisdo is for me a sort of healing process, because whether you're a patient or a caregiver, there's this strange phenomenon where people feel responsible for what happened. Guilt is a huge misplaced emotion in patients and families; the guilt that more could have been done and done differently.” The development of the technology behind the Wisdo platform is centered in Herzliya, while content management and moderation of the insights is done in the US. Most of the insights are also written by breast-cancer community members in the States. “Our conversation is currently with the US patient community,” says Gaon, “although in a world of social networking, the flow of wisdom cannot be contained.” Insights might get re-posted to Facebook and Twitter and then shared and tweeted again until, eventually, someone in New Zealand reads an insight about parking laws for cancer patients in California, for example, and will feel moved to share an insight about parking laws for cancer patients in his hometown. “The idea is that one insight will generate more insights on the same subject that will personalize the experience for other patients. That is really the nature of crowdsourcing. We are also adding a geolocal tag to insights to indicate that they were generated by someone from a specific place on Earth. In this way, if someone from New Zealand accesses Wisdo, we'd be able to share insights that are sensitive to that person's location.” Naturally, there are a number of insights contributed by Israelis whose navigation through breast cancer are the same in essence as those from their American sisters. One Israeli contributor is Ahava Emunah Lange, who is suffering from stage 4 metastatic cancer. Lange's insights include much practical advice, such as how to combat mouth sores associated with chemotherapy, but she also touches on the more emotional aspects of cancer. “I don't really connect with the metaphor of the cancer battle. For me, life is not a war or a fight. Life is a giant canvas and we are all tiny pixels. Every soul is an important part of the big picture. Someday we may each merit to see that giant work of art… somewhere. There is no shame in seeking emotional support from therapists and anti-anxiety medication. I openly admit and share that I take medication to help me manage my anxiety and I no longer suffer from panic attacks. It helps me to be open about my cancer journey and I remind my children and loved ones that my cancer isn't a secret and they can ask me any question.” This writer has also contributed some insights. When I discovered that cancer cells had silently and insidiously invaded my breast, the contours of my world shrank to the immediate future. I could not envisage how I would spend the coming week; I couldn't even predict what I would be doing the next day. Almost nine years later, Wisdo insights so resonate with me that I want to leap up and shout, “Yes, that's how it is!” Thanks to the women – and a few men (one in 1,000 men will develop breast cancer) – who are sharing their wisdom, today's sufferers can avoid the indiscriminate Internet scanning that caused me such turmoil and left me with the unbearable disquiet that it was I who was somehow responsible for my cancer. The ultimate aim of Wisdo is to provide a platform for wisdom on a wide spectrum of life's challenges, such as depression and drug addiction. “But for the next year,” says Gaon, “our focus is on health. We already have time lines for other illnesses, such as lung cancer, which is what my father had. Lung cancer is fascinating and frustrating and includes a number of psycho-social milestones about coping with imminent endof- life. “We see ourselves as a movement to bring wisdom back to where wisdom needs to be,” he continues. “I think it helps the wounded parts of all of us to see that we can make a difference in the lives of the chronically ill and the newly diagnosed. And in that respect, it's very satisfying.” For more information: wisdo.com
Wisdo co-founders (left to right): Arik Gilon, Ido Engel, Arie Gofer and Boaz GaonUpdated: Read More