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Cancer Survivor Provides Forum for Patients to Share Personal Journeys

Amy Ohm of Treatment Diaries

This episode of Drugwatch Radio features Amy Ohm, the founder and CEO of TreatmentDiaries.com. Treatment Diaries is an online patient community that allows people to share their personal journeys with illness and to read the accounts of others.

Ohm’s melanoma diagnosis inspired her to establish Treatment Diaries. She didn’t find many places where she could anonymously share and learn from others.

The Treatment Diaries community is a place where patients can “make authentic, quality [and] lifelong connections,” Ohm told Drugwatch.com. In addition, they can learn from the experiences of others who face the same medical issues, in a safe, private environment.

People also visit Treatment Diaries because they are concerned about the side effects of drugs. Some may have developed medical problems resulting from these drugs or complications from medical devices.

Since new drugs are constantly released on the market for chronic diseases such as high cholesterol, Type 2 diabetes and depression, there are greater chances for suffering side effects – some of which are more serious than the original illness the drug was prescribed for.

Support Without Judgment

After her cancer diagnosis, Ohm immediately turned to the Web for support. She expected to find others like her and get a sense for what she was up against.

Ohm also said she wanted a place to share what she was going through and ask about it in private, without friends, family and co-workers learning of her experience.

“Unfortunately I found the complete opposite,” she said. “I found that 90 percent [of the information] was really clinical in nature…and it wasn’t what someone who was newly diagnosed would need to know.”

Ohm said that she created Treatment Diaries to fill this need, and she plans to expand the number of services offered to members of the site and provide more resources.

Help for People Injured by Drugs and Devices

Like Treatment Diaries, the mission of Drugwatch is to help people who are dealing with medical problems.

The difference is that people who come to Drugwatch developed life-changing illnesses as a result of taking a dangerous drug or receiving a faulty medical device.

With these types of injuries, people often wonder about their legal options and what kind of help they can get to pay the mounting medical bills, compensation for time lost from work and the suffering of loved ones. The legal process can be confusing and stressful, but no one has to face these issues alone.

This is where Drugwatch comes in. Our Patient Advocates are professionals who can help you figure out what your options are. Call our Patient Advocates today at (888) 645-1617.

Want to Be a Guest on Drugwatch Radio?

If you were injured by a drug or medical device and want to share your story, contact Drugwatch Radio at [email protected].


Transcript

Michelle Llamas: On this episode, my guest is Amy Ohm, founder and CEO of Treatment Diaries. Amy was inspired to create Treatment Diaries after being diagnosed and surviving from melanoma cancer. As a patient, she saw a need for a private place where individuals could share their medical journeys and get input from others who were going through the same thing.

Hundreds of thousands of people around the world connect on Treatment Diaries to share their journey. People injured by drugs or medical devices often need their own private forums to share experiences. Many of these people are victims of medical problems that may have been brought on by the negligence of drug and device manufacturers. Here is the recorded telephone interview.


Michelle: I have with me today on the show Amy Ohm. She is the CEO of Treatment Diaries. She is joining me by telephone today. Welcome to the show, Amy.

Amy: Thank you, Michelle. Happy to be here.

Michelle: Can you tell us a little bit about Treatment Diaries and its mission?

Ohm: I’d be happy to. Treatment Diaries is a social network. One of the ways in which we’re really unique to the marketplace is the fact that we extend complete privacy to those living with illness or who are newly diagnosed or caring for someone with a medical condition … the opportunity to interact via personal diary. They have the opportunity to be social, yet private, and to be part of a community that understands their particular situation and, in essence, allow them to share or just read or even search the diaries for information that would be relevant to their particular experience.

In living with a chronic illness or rare disease, or being newly diagnosed with any condition, it can be incredibly overwhelming. The desire to connect with people facing similar circumstances is, I think, a very high priority for most. And being able to, in this world of social media — where everything is completely public — have an opportunity to do that privately is really a unique opportunity and experience.

Michelle: You mentioned that about social media. I do notice that a lot of people use that – usually to reach out, message boards, Facebook communities. But like you mention there, the main difference is that all of those things are completely searchable, and people might not want what they’re saying to be out there for mass consumption. Treatment Diaries does provide that nice privacy, like you mentioned.

How did Treatment Diaries come about, and what was your inspiration for it?

Amy: Treatment Diaries was born out of a personal experience I had with a cancer diagnosis. It was really my expectation that I would be able to readily search the web and find people like me and get a sense of my diagnosis and what I was up against, but unfortunately I found the complete opposite. The majority of the information – near 90 percent – was really clinical in nature. The information that was being provided was very litigious, numerous disclaimers from the drug companies, or nonprofits that really weren’t able to share as much about the condition as someone who was newly diagnosed would need to know.

Quite honestly, I didn’t want to be super public about what I was looking for because I was in a situation where I was a software professional and not wanting my corporation to necessarily know, and really didn’t really want my family to know until I knew what I was up against. I found that it was a complete void in the marketplace, and an opportunity to create something that didn’t exist so that others wouldn’t run into a similar situation.

Michelle: That’s really important what you mentioned there, about the fact that having people know about it affects it on so many levels. You wouldn’t expect that people that have certain illnesses would have to worry about that, but you’re right, it’s very true: employers knowing, friends and family knowing, and before you know it, it becomes this big thing, and you’re not even entirely sure what’s going on yet. That’s definitely a big plus – sharing with other people that have it, and without the fear of that stigma, too.

Amy: It’s definitely safer. You get an opportunity to really be open and authentic with the things that you want to know about and the things that you’re willing to share. Because without privacy and anonymity, that’s a very difficult bridge for many to cross, because they’re not even very comfortable in the situation that they’re in, let alone sharing it with people that know them and might – to your point — be a stigma component, depending upon what condition it is.

And then also, just the exposure. At that point, you’re completely exposed. If you share anything on any forum on the web today that’s not behind a firewall, you are putting yourself out there. Someone who wants to do a search on you will likely find out what you’re all about – for better or for worse.

Michelle: I think even things that you think you’ve deleted, can be searched. They’ll be cached somewhere, and then you’ll have that floating around, and it’s not something that you want the entire world to know.

At Drugwatch, we do something similar. Obviously, we don’t offer a place for people to tell their stories in that fashion, but we do post a lot of information out there for mostly dangerous drugs and medical devices. You talk about illnesses that people have. It’s a very real thing that people will actually get illnesses, diseases and complications from dangerous drugs and medical devices. Is this something that you deal with on Treatment Diaries? Are there many people that suffer from these types of health issues that use it, to better understand what’s going on with them?

Amy: Absolutely. One point of clarification I probably owe you is the fact that the site is really self-run. It’s not something that we moderate. We monitor, but we don’t drive the conversation. The conversation is strictly amongst those who choose to participate. We certainly get an opportunity to see some of the content and get a sense of what’s being exchanged.

To your point, there is a lot of activity around the repercussions of certain treatment protocols, whether it be specific drugs or medical devices. It’s probably not surprising, because these are things people probably wouldn’t want to be public about necessarily. They are looking for information: “Am I the only one that this is happening to, or are there others who are experiencing similar scenarios?” Whether it be a reaction to a drug or a recall on a medical device, people want to know that they … are experiencing this because of a defect or a bad release or things that they can, in turn, address through the experiences of others.

Michelle: Again, there’s stigma also attached to that. I think the tendency … for how to treat these illnesses that come from devices or drugs, is to say that it’s that person’s fault or that person’s own body that’s doing it. It’s so hard, to make sure it’s not a separate disease that wasn’t caused by something that you were doing – is probably one of the biggest things that people worry about. Where did this come from? Is it really just me or did something cause this in my body? Figuring that out – talking to other people is what helps, in that sense.

Amy: There’s a big emphasis on psycho-social there, because … there’s the psychology behind being social with the things that our bodies are fighting, the things we’re contriving. You need to know that you’re not alone on that journey. Probably the first thing that happens to someone who is newly diagnosed or who’s experiencing side effects from a treatment or some sort of medical device, is really that feeling of isolation: “I feel really alone in this. I don’t know anybody else who is going through this.” And you feel like a failure.

Michelle: You mentioned the cancer diagnosis and the treatment. Chemo and a lot of those treatments are known to have a lot of tough issues that your body goes through, and I think you want to know, “Hey, did everybody else have this happen, or is it just me?”

Amy: Exactly. And guess what? Here’s the other thing that happens that we haven’t talked about. You aren’t happy about it, and guess what? Your family and friends don’t want to know that. Because human nature is to fix things and to provide you with support, but when you can’t relate directly to what somebody is going through, it is very difficult for you to offer the right kind of support.

It is not uncommon for people going through treatment for cancer or who are living with a chronic illness – or even, more so, somebody caring for somebody with a chronic illness – to come to Treatment Diaries and to use their personal diary as a way to just put it out there, to say all of those things that they would never say out loud to the people who know them physically, because guess what would happen? Those people would panic. Those people would judge them. Those people would probably walk away from them.

They don’t have an outlet, so Treatment Diaries is in fact that place where everything goes. It’s often related to health, but sometimes it’s just about life. It’s those things that if you hold them inside, it’s toxic. But when you share them, and people go, “It’s totally OK for you to feel that way” because they can relate, then it makes it better.


Michelle: We were talking about some of these defective devices and drugs. A lot of the ones that are in heavy use now – a lot of people are using – are Type 2 diabetes medications and the hip implants. More and more people are getting these joint replacements, and of course diabetes is on the rise, unfortunately. So that sort of leads the way for more drugs to be produced, which might not be necessarily tested correctly before people get them.

They’re having all these side effects that, in some cases, are really more serious than the original condition. … I know you mentioned you don’t see, obviously, a lot of people’s stories, but have you seen sort of a rise in these sort of stories being shared, with diabetes or maybe hip implants?

Amy: We actually have. I did do some due diligence on what people might be talking about in those categories and ran some scenarios just to see to what extent it was a majority or minority of the things which people are discussing. I will tell you that, on the Type 2 diabetes front, there’s definitely a huge trend upward on that topic, and often with male participants as opposed to female. I think that’s for a couple of reasons. I think men are generally more private about their health, certainly don’t want to be public about it.

Michelle: No, no.

Amy: They find Treatment Diaries is a great way to learn and to share. And Type 2 diabetes, I think, carries a bit of a stigma because you’re not born with it; you basically (contract) it through diet and nutrition …

Michelle: Lifestyle disease is what they call it. There’s that “you sort of brought it on yourself” – kind of stigma. That’s not fun.

Amy: Men often – females, too – don’t want to take medication because they’re scared of what it’s going to do. And especially with a Type 2 diabetes scenario, they’d rather just find another way to deal with it. So, we often find in the diaries that people are talking about lifestyle changes, nutrition, that component of exercise, coupled with diet, to see if they can impact it.

And then they turn to — if they actually have to take insulin — do I do pump or do I do shots? There’s a lot of conversation around that. But to your point, there’s all these secondary conditions that begin to surface – that people will, in turn, share information about.

Michelle: When we talk about defective drugs and medical devices, I think a lot of the questions, then, could turn to, “All right, should I be suing somebody over this?” Is that something that they even talk about on the diaries – something that has all these other spin-offs of the original condition that they’ve got? It’s a whole-life thing.

OK, maybe somebody is now looking at, “Maybe I should be suing for this because now I’ve got cancer. Or now I’ve got pancreas issues when I didn’t have before. Or I have to get another surgery on my hip.” I don’t know if that’s something you notice on there, as well. It was just question I had because of the fact that these problematic products usually end up leading to something of the legal nature.

Amy: Yeah, I think it’s an interesting topic because when I look at the demographics of the folks on our site, I feel like, often they come to us really at the bottom. It’s not because they’re happy and everything’s going well. They don’t have anywhere else to turn. They’re looking for a number of things. They’re looking for insight into their situation. They’re looking for resources to address the situation. And then they’re looking for support to carry forward with respect to their situation.

I don’t know that they often realize that there’s a sense of retribution, in some aspects, to what they’re going to. I think that that information isn’t always readily available to them. I think they just believe that these things are happening because they’re chronically ill, not because of a specific incident or drug recall or medical device recall or necessarily anything bad. They’re just focused on living every day – like “How do I actually continue forward?” So I do think there’s opportunity, though.

Part of our mission is to ensure that they have the resources they need to carry forward and that they are alerted to things that they wouldn’t necessarily know to search for. That’s part of our mission – to really find companies like yours that enable them to identify with options and alternatives. We also work with companies like Cure Launcher. Cure Launcher helps connect individuals with personalized medical treatment options, i.e. clinical trials. …

We also work with a company called WeCare Card. WeCare Card is focused on making sure that people use their social network, essentially, to connect with their community, to understand how they can fund some of their financial hardships, whether that’s associated with “I don’t have enough money for my medication,” “I’m stressed about paying my electrical bills or my mortgage because I’m chronically ill” or “I want to raise money for other people.”

We’re consistently out there trying to find those unique resources and organizations that are centered on patient care, caregiver resources, to make sure these folks know what’s available to them.

Michelle: Because like you said, when you get hit with a lot of these things, it’s just enough for you to consider, “All right, what am I going to do tomorrow? How am I going to get up tomorrow and do a load of laundry?” or something simple like that.

Amy: Exactly.

Michelle: All these other things that are crowding in – that unfortunately come with a chronic illness or maybe an injury from a drug or device. It’s all these things that are difficult for a person to talk about. It’s kind of good that you are saying, “Here, we want to be a one-stop shop for people to get help when they get ill” – that is not like maybe a crazy site like the FDA’s sites, where it is difficult to find anything on those; it’s horrible.

Amy: These people are already overwhelmed with disability, like trying to navigate that whole landscape because now they can’t function in their jobs. Most people who have a cancer diagnosis no longer remain employed. There aren’t that many forgiving employers. “If you’re out for treatment and you can’t come to work, we can’t employ you.”

There’s a whole new network of health care assistance that these folks need access to, and they just don’t even know where to start.

Michelle: I like the fact that you come from a very patient-centric (perspective) – or person-centric, shall I say? Maybe we don’t want to necessarily call people “patients,” ‘cause I think that’s another thing that usually ends up happening when you’ve got an illness. You become a “patient”; you’re no longer a “person,” which we always try to think about when we’re writing things for people that are reading about all these crazy diseases.


Michelle: Like Treatment Diaries, Drugwatch is an online resource for people who may suffer from health issues. How do you feel the Internet and sites like ours have transformed the way people view health care?

Amy: I think that social media is quickly bringing that individual – whether it’s a patient, caregiver, health care advocate, physician – much closer to the center of care, in providing extreme empowerment to that individual. Because it is about people and their experiences and getting to the meat of what is going on, as opposed to just reading information, because there’s just a lot of information out there.

Michelle: Yeah.

Amy: Social media is making that a real-time experience. You can do a search on just about anything and probably find somebody — whether it’s Twitter or Facebook — pretty quickly. What’s missing from that – and what Treatment Diaries brings to the table – is the privacy to discuss it. I can read a lot about certain conditions, and I can find people who their mission is to tell and advocate for anyone in a similar experience. But what I can’t have with them on Twitter and Facebook is a private conversation. Even though you have private messaging, you’re a little bit limited. And I can’t read their whole story, unless I go read their blog.

Social media is at a really neat time in our world and with our generation and those younger, and even for the sandwich generation and (those) older who are able to be part of the Internet, because I can be part of the conversation, right? I can learn from people and create relationships that, 10 years ago, would never have happened. You would have to know somebody in your community, and you’d have to go to coffee with them, to sit down and have a private conversation. Now I can have as many conversations as I want in private, either by reading the diaries of others or by participating through what we call “scribbles” in their diary or by creating my own and seeing who else is having a similar experience.

I think it’s a really cool time for somebody who feels alone in an illness, who is searching for information about how to address that illness, or who is looking for the results of something negative in the treatment that they’ve gone through, and looking for some empathy and compassion and maybe direction on how to address that. It’s a really exciting time.

Michelle: I guess what you mention there, the best thing about it is the fact that it’s made the world smaller, right? People don’t have to be, like you mentioned, sitting together over a cup of coffee to describe what’s happening and to really be heard, because you’re taking all the filters out. People don’t know what you look like. People aren’t judging you on that; they aren’t judging you on anything. They are just reading your story.

Thank you so much for joining us on the show. I think Treatment Diaries is a really great resource for a lot of people that are wondering about what’s going on with them — so they don’t feel so alone or isolated, like you mentioned. I think, personally, that I see a lot of that. With everybody that calls in or writes into us, that’s a lot of what’s going on with these illnesses. Again, thanks for providing this resource for people.

Amy: Absolutely. Thank you for allowing us to have a forum for sharing what it is that we do and what we’re focused on. Again, we thank you for what you’re doing and your mission, because again, it’s very, very important for society to understand – hopefully continue to work closely together to share that message so that more people can benefit from it.

Michelle: Absolutely. Thank you so much, Amy.

Amy: You’re welcome, Michelle.

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