Amy Ohm, co-founder of Treatment Diaries (Td), was diagnosed with cancer in 2004. Instead of allowing it to bring her down, she was inspired to start an organization that would unite patients, caregivers, and family members in strength, learning, and understanding. Out of her inspiration and drive came Treatment Diaries—a private online platform that users can use to share their current treatment experiences and diagnoses with others who are suffering from similar illnesses or issues.
The purpose of Treatment Diaries is to allow people to connect openly and honestly about their fears, hopes, and personal thoughts without having to worry about their privacy or guarding what they say.
Whether you suffer from a physical or mental illness yourself, or you have a friend or family member that is experiencing one, Treatment Diaries offers you the chance to scribble your thoughts, feelings, and questions where other users can find and interact with them to offer support and ease your mind.
We connected with Amy to pick her brain about the organization, the value of technology in medicine, and what some of the most important resources are when faced with a diagnosis.
1) What inspired you to found Treatment Diaries?
Treatment Diaries found its start as an online patient community, providing an opportunity for individuals to anonymously share their health journey via a personal and private diary. We started Td because of the limitations of social media as it relates to privacy. People don’t always want to be public, especially about health, but they do want to be social with those who can relate and provide real life experiences. Keeping social private so people can share their life has helped Td become a unique and valuable digital health platform. There is a growing market demand to meet patients and caregivers where they are actively searching for health-related solutions – Treatment Diaries is answering the call.
Today, by virtue of being anonymous and the willingness to share a personal story, this platform has been instrumental in connecting individuals around the world who are looking for those on a similar journey and who can provide insight into resources, treatment options and outcomes. This platform now serves as a way to bring personalized adherence, compliance and disease awareness materials and valuable resources to people in a way that serves our users and brings them closer to the center of their care.
2) In the last few years, technology has assisted in creating, implementing, and maintaining medical advancements. Have you seen any notable positive changes in diagnosis or treatment processes since you started Treatment Diaries?
The changes we’ve seen are extremely positive. The value of learning from those with a like diagnosis is empowering patients on Td to be proactive in their care and in advocating for answers and information. Patients and caregivers scribble about medications, side effects, treatments and care across 1,000’s of related conditions – this information is searchable and interactive. There is tremendous value in learning from the patient in layman terms versus medical speak. We break down the wall of patient-doctor communications by enabling patients to better understand their condition through the real-life experiences of others. In addition, the stories of successful treatment outcomes and approaches bring hope to those newly diagnosed who may feel isolated and alone. It’s a powerful platform, rich with real life experiences, providing a path for those individuals needing direction on how to navigate life.
3) Treatment Diaries is comprised of an online community as opposed to face-to-face conversation. Why do you think that anonymous virtual interaction is so beneficial for people who are ill or who know someone who is?
This is a great question and at the heart of what makes Td so valuable to our community. It’s a bit of an anomaly – to think about being social while remaining private, but it works. In fact, it’s proving to be a welcome change and better than any other platform for supporting those with an illness and those who care for them. To be anonymous provides complete freedom to be transparent about your health concerns and questions without being over exposed via social media. The virtual aspect allows for it to happen anytime and anywhere. We have folks from around the world, who will never physically meet, building incredible bonds and exchanging a wealth of encouragement and insight because they share the same health related experience.
Td is bringing a different kind of social to the world. It’s not about who you know and if they like it. It’s about what you say and why it matters. It’s the intersection of health and social with complete privacy and it’s making a difference.
4) Do you come across many people who are looking into advanced healthcare planning? Do you believe that it is an important factor when you or a family member is faced with terminal illness?
Advanced healthcare planning is extremely important and there is an increased demand given the general status of healthcare in our nation. At Td, we believe it is incredibly important at any stage of life to have this foundation in place. Unfortunately, we don’t know when illness will strike and the severity of the condition. Having our life in order and the desires documented offers peace of mind and a clear plan for our families. We are excited about our partnership with LawDepot and the chance to provide a reminder to our community of this invaluable resource.
5) In your experience, what is the best advice for someone who is trying to maintain their professional or business life while experiencing a serious illness?
Keep it private and don’t be afraid to reach out to those who can offer support and encouragement. Maintain a balance of informing friends and family of where you’re at with treatments and your overall diagnosis while building strong bonds with those on a similar journey.
I have a very close friend who battled breast cancer not that long ago. She is a busy executive in a large corporation and she struggled with keeping co-workers, friends and family up to date. She chose a recognizable blogging platform to broadcast updates so that everyone would know the details, removing the task of emailing and calling folks on a day to day basis. She was forced to be guarded in her updates to avoid setting off the 911 and triggering calls and emails. However, she found a great benefit to telling the whole truth on Td without concern for sharing too much. She could scribble about her fears, how horrible she felt, how her hair was falling out, bad days and good. She could be real and it became the balance she needed to be social while keeping it private.
6) What forms do you think are the most important for someone who has been diagnosed with a serious illness, and how do they assist the individuals and their families?
All too often families are forced to make hard decisions during a very emotional time when the patient’s desires are not documented, unprotected and virtually unclear. We think it is important to have a Last Will and Testament to support your wishes and protect your assets. Certainly a Medical Power of Attorney along with a Healthcare Directive is equally important. Appointing someone you trust to make healthcare decisions for you in the event you are ever unable to make them yourself is something everyone (in health or in sickness) should plan for to alleviate added stress and confusion. Be clear about your needs and put the right documentation in place to support your wishes. Your family will thank you.
7) What was the biggest challenge that you faced when starting Treatment Diaries and how did you choose the name?
The biggest challenge was getting the word out – Td is more than just a site for a single condition. We are NOT just for those with cancer, or for caregivers…we aren’t JUST a mental health site. We made a conscious decision to be all things to those who were in need. We cover 1,000’s of health related conditions, so letting people know was a bit of marketing puzzle. But now we have brand recognition and people know we are a private, safe and anonymous platform for sharing life with those who can relate. Td is that place to come and share, search, gain knowledge about conditions, treatments and resources without the rest of the world knowing it.
We chose the name because we felt strongly that it described to a tee what we offer — your story told in a diary about your treatment, independent of condition, to be shared privately. The word “treatment” is heavily searched which provides an added advantage to when folks are looking for insight via the web. Admittedly, there was a bit of luck involved and we are thankful for the opportunity to bring a platform and safe haven to all those in need around the world.
If you or someone you know is suffering from any kind of illness, visit Treatment Diaries and start scribbling!