A European Patient Advocate Speaks Out

(Editor’s Note: Christine Bienvenu is on the Board of Trustees of our sister organization in Switzerland, the Patient Empowerment Foundation)

ePatient Advocacy

patient advocate

Christine Bienvenu

In hindsight, I can honestly say that my ePatient advocacy started in 2008, when my eldest son was diagnosed with Asperger’s Syndrome. With Switzerland rather behind (at the time) in its knowledge about – and treatment of – Asperger’s, I could only find information and communities online that was based in North America. With absolutely nothing like it available here in Switzerland, I decided to create an online platform; today, we are some 300 members who care, share, and support. Our son is thriving in the mainstream schooling system, thanks to our advocating, as parents, for him.

In 2010, my world imploded when four words were uttered: “Triple-Negative breast cancer” (TNBC). Within a year, I’d had 6 rounds of aggressive chemo and a double mastectomy. As for my son, I became my own advocate in TNBC, reading, researching, and asking questions, connecting online with breast cancer patient communities in North America.

There was nothing like it here in French-speaking Switzerland. Health Care Social Media (HCSM)? Unheard of. Patients as partners? Nope. Online patient communities? Way too virtual. While indeed outstanding, the Swiss healthcare system today is highly paternalistic.

So there I was, trying to come to terms with my triple-negative diagnosis, with no local online community to connect with, yet wanting to be able to make empowered, well-informed decisions, and desperately hungry for support from patient peers and access to quality content.

 Social Media and Online Community Expert

Time and treatments marched on. With it, my passion and interest in digital health, HCSM, and patient empowerment grew exponentially – so much so that I became a certified Social Media and Online Community Expert. My thesis involved creating a social media ecosystem with multiple channels (blog, Facebook group & page, Twitter account & LinkedIn page) that would concentrate all breast cancer-related information for French-speaking Switzerland into one easily-accessible space, open 24/7…

A few good girlie brainstorming sessions later, “Seinplement Romande(s)” was born. For those who don’t speak French, “sein” means “breast”. “Simplement” means “simply”. Melding the two, I created “Seinplement”, playing on the notion of the breast and simplicity. The word “Romand(e)s” is a nod to the French-speaking Swiss. As soon as it was launched, the platform took off. Today, members from a number of French-speaking countries are able to connect.

Two weeks before I was due to defend my thesis, I found out I had relapsed. Let my cancer get in the way of earning my diploma?? I.Think.Not. I defended my thesis. And then tackled another 15 rounds of chemo and 28 rounds of radiotherapy. The cancer was knocked into remission by year-end.

HCSM Patient Expert

During my treatments, I focused on promoting patient advocacy and empowerment through social media, connecting with the communities I had founded, meeting ePatient Dave deBronkart and volunteering to translate his “Let Patients Help!” book into French (“Impliquons les Patients”, available on Amazon), attending classes, speaking at international conferences (including the digital health conference, “Doctors 2.0 & You” in Paris in June 2014 and June 2015), and meeting with medical professionals keen on empowering today’s patient. In the meantime, I’ve been hired as Health Care Social Media (HCSM) Patient Expert by both the Geneva University hospital and the Lausanne outpatient university clinic.

On this journey, I’ve seen the importance of having an open-minded, communicative medical team. Last spring, I changed my entire medical team. Trust me: Not easy here, where respect for the “White Coat” is both deeply ingrained and rarely challenged. As hard as it was to do, that very change may have just saved my life…

Access to Clinical Trials

This past July, I yet again relapsed. This time, my new oncologist is young, dynamic, open to participative medicine and shared decision-making. She’s also a researcher. The advantage? Access to clinical trials. In fact, she had the wisdom to do a biopsy to see if my Triple Negative status had changed, and indeed it has: I am now HER2 positive.

Thanks to her discovery, I can benefit from a more targeted treatment plan – something I wouldn’t have had access to if I had still be considered a Triple Negative patient. Only Time will tell. I’ve only just begun my treatments. What I do know, though, is that I will do everything in my power to keep up with advocating for patient empowerment.

When a Melanoma Diagnosis Brings Clinical Trial Options

36 year old Female diagnosed with Stage III Melanoma on May 19, 2014

Diary Entry

I’m fairly new to this fight and not exactly sure what to even expect. Since my diagnosis, I had one surgery to cut off the melanoma (it was on my toe) along with a 3 week recovery while unable to work. It took three weeks for the biopsy to come back. I guess hearing the doctor say that the pathologist said that they had never seen anything like it, isn’t a good thing. Next, was an amputation of that toe, along with Lymph Nodes from my groin area. Those results did not bode well either. Out of the 3 that he removed had a tumor in it. So, my journey next took me to Baltimore, Maryland where I met with an oncologist surgeon. I had a complete dissection on my left groin area. During my follow up visit I found out that the doctor removed 11 lymph nodes and two more came back with cancer cells. I was readmitted to the hospital thinking that my incision was infected. It wasn’t, but the drains weren’t working all that well either. The doctor opened my incision and my wonderful husband has become my nurse and packs the incision twice daily. I couldn’t be luckier than having such a wonderful husband. During all this, I learned that I am extremely claustrophobic. That puts a slight crinkle in trying to have all these tests that I need to have. I try to stay optimistic and keep my sense of humor.

Clinical Trial Options

So now I am exploring clinical trial options.  I have asked for more information on Yervoy, with Melanoma and clinical trialseveryone’s advice. In my area, to receive Yervoy for stage 3 melanoma, you have to be part of a clinical study or whatever. My doctor promised I wouldn’t be given a placebo. But, I would have to travel quite a distance. I know that there are quite a few of you on here that have traveled for treatment. But, for me, right now, it’s just not an option. I have teenage children that need me to be home. I could never do this alone. My husband would be with me, which would leave no one at home…. I am starting on Paxil this week and should (depending on my insurance) start treatment next week. I have had two people on Treatment Diaries tell me about Yervoy and I don’t want you to think that I am not listening to your advice. But I have had 5 doctors tell me that interferon is probably in my best interest. I don’t know how this is going to go. I’m hopeful, and again, I won’t be alone. My husband has and will be with me for the duration of all of this.  I am hopeful!

 

Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a cancer diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

 

Clinical Trials and Young Cancer Patients

Few Cancer Patients Enroll in Clinical Trials

It is well known that very few people with cancer actually enroll in clinical trials. This, for a myriad of reasons, including misconceptions, logistics, awareness, eligibility and fear.

Many patients lack awareness of what a clinical trial actually is, what it is for, and what is being tested.

Many healthcare professionals do not fully communicate information about clinical trial availability and participation when discussing treatment options with their patients.

Patient Advocacy organizations and other healthcare groups are trying to get the word out about clinical trials as a good treatment option and raise awareness. But progress is slow.

There are myths perpetuated about patients being “guinea pigs” in medical trials, or about patients being given “placebos” in the place of cancer medication. These myths need to be addressed and there are organizations and websites that do offer general answers to patient questions about trials. Patient Empowerment Network offers a FAQ page that addresses common questions about clinical trials. And ProjectInnovation offers a special section in their resource guide called, Debunking Common Myths About Cancer Clinical Trials.

Besides a lack of awareness and perceived misconceptions about clinical trials, there are logistics and eligibility obstacles that prove to be just too overwhelming for many patients. These obstacles are being addressed by many organizations, but again, progress is slow.

Do Younger Cancer Patients Experience the Same Preconceived Ideas About Trials?

Most cancer patients are older. What about the younger cancer patients? Do they feel the same way? Do they have the same misconceptions and the same fears? Do they also suffer from the same lack of awareness? Are they also overwhelmed by logistics and eligibility issues?

These are questions that StupidCancer and Bristol-Myers Squibb are trying to answer.

StupidCancer, founded by Matthew Zachary, is the largest charity that specifically focuses on young adult (age 15-39) cancer. There are 72,000 cases diagnosed each year of young adult cancer. This group suffers from a lack of awareness and understanding from the community around them. StupidCancer helps by building awareness, offering support and resources and generally getting the word out through advocacy, research, outreach, mobile health and social media.

Iamnotatrial Project

StupidCancer, in partnership with BMS, is embarking on a project called “iamnotatrial” that will feature young people between the ages of 15 and 44 years old who have completed a clinical trial in one or more of 15 cancer types. These clinical trial participants will be featured in a series of short videos that will tell their stories and relay their experience with clinical trials and will hopefully help build awareness and interest in clinical trials within the younger patient community.

When interviewed, a representative from StupidCancer explained that the goal of the iamnotatrial project is that by showing real patients and survivors telling their story in their own way, by video, that they can channel the energy of these patients and send it towards other patients who are taking action and looking for trials, enrolling and asking questions.

It is the hope and intention that viewers of the videos will become more aware that trials are a viable option, that there is diversity (gender and ethnicity) in trials and that there are many reasons to participate in trials- to help yourself as well as to help others.

Patients Helping Patients

Cancer Patient

Empowered Patient at a recent Town Meeting for Cancer Patients

Patients learn from patients like them. Patient stories are a powerful way of getting the message across. We are anxious to see these videos and champion their cause. We are anxious to help SupidCancer get the word out about clinical trials to their younger cancer audience.

Talk to your medical team and consider a clinical trial. It could be the best treatment option for you.

How Do Clinical Trials Work?

Patient Empowerment Network, in association with Patient Power, hosted a town meeting for advanced prostate cancer patients at MD Anderson Cancer Center. This event was attended by over 100 patients, caregivers and family members and live-streamed to an online audience. Videos are now up on our website for viewing.

During the Q&A period of this meeting, one participant asked the expert panel about clinical trials and how they work. The panel responded by discussing trial availability and eligibility criteria. The town meeting host, Jeff Folloder, a cancer patient, relayed to the panel his experience with clinical trial participation at MD Anderson.

Jeff explained that his medical team at MD Anderson really researched all clinical trials available and picked the best one for him according to his particular situation. Zita Dubauskas, the Physician Assistant on the panel, further explained that during a trial, the patient is very carefully monitored and scrutinized for side effects by numerous other medical personnel and really gets an extra level of medical care.

Watch the video and learn more!

How Do Clinical Trials Work? from Patient Empowerment Network on Vimeo.

How Do I Enroll in a Clinical Trial?

Oftentimes when we hear the word “cancer,” we hear nothing else. Our brains stop processing information. We think we’re going to die, that there is little or no time to weigh options and/or get our affairs in order.

Fortunately, that last part the vast majority of the time isn’t true. We DON’T have to rush into anything. We DO have time to weigh our treatment options. And for many patients, those options can include enrolling in a clinical trial.

What is a clinical trial?

According to PAF, the Patient Advocacy Foundation, clinical trials are research studies in which we patients can help doctors find ways to improve cancer care.

There are several types of trials

  • Treatment: to test a new drug or approach to surgery
  • Prevention: to test new approaches with medicine, vitamins, minerals to help lower the risk of developing certain cancers
  • Screening: Best ways to detect cancer early
  • Quality of Life: Explore ways to comfort, quality of life for patients

Why participate in a clinical trial?

Through clinical trials, doctors and researchers find better ways to prevent, diagnose and treat cancer. Patients can benefit by receiving cutting-edge care or emerging medications. Rarely are placebos, or fake medications, used in clinical trials. Patients for the most part are being given the current standard of care or the new treatment, to determine the following:

  • Phase   I: Is the new treatment safe?
  • Phase II: Does the new treatment work?
  • Phase III: Does the new treatment work better than the current one?

Is a clinical trial right for me?

There are risks and benefits. A good place to start making an assessment is with your physician. Often, we’ll hear about a clinical trial from our doctor. However, you don’t have to have your doc’s OK to enroll in a trial, and it’s key to determine which trial is right for you.

While there is no one source to learn about all cancer clinical trials, you can break it down into clinical trial lists and matching services.

Lists:

The National Cancer Institute (NCI): 1-800-4-CANCER (422-6237 NCI sponsors most government-funded trials. You can search by the type and stage of cancer, by the type of study (treatment or prevention) or by zip code.

The National Institutes of Health (NIH):   NIH database is larger than NCI but not all trials are cancer studies

CenterWatchCenterWatch provides a list both of industry-sponsored and government-funded clinical trials for cancer and other diseases.

Private companies: Pharma or biotech companies may list studies they are sponsoring, either on their websites or through a toll-free number. You can search a company with the words ‘clinical trials’ in the search. If that company is conducting trials, it will appear in your search. For example:

pfizer.com/research/clinical_trials

amgentrials.com

abbviephase1.com

You get the idea.

As for those clinical trial matching services, each one works differently. Some may charge a fee to the trial sponsor. It could impact the way studies are ranked or presented to you. We suggest you start with the free sites. Sources include:

The American Cancer Society Clinical Trials Matching Service:    1-800-303-5691  ASC works with a company called Eviti  to connect patients with trials. It’s free. It’s confidential. It’s reliable. The lists are updated daily, and it allows patients to contact health care providers running the studies. The website also explains how to determine if you are eligible for a trial, if a trial is right for you.

EmergingMed:  1-877—601-8601  Also free, confidential and reliable for cancer patients seeking a trial.

Various organizations have partnered with EmergingMed and offer widgets that link to the EmergingMed trial finder. For instance, both the sites below link the viewer to the EmergingMed clinical trial finder:

www.oncolink.org/treatment/trials.cfm

www.lungcanceralliance.org

There is a wealth of information here. But you don’t have to become a Medical Doctor to digest and evaluate it. Start with your physician. If he or she doesn’t have enough information, choose a website or two on this list to navigate for information about trials. That’s what I’ll be doing should the day come that I need additional treatment. We are our best advocates about what’s right for us and when.

(We want to help you if you are considering a clinical trial. Please look at our FAQ and Clinical Trial Toolkit pages and browse our Patients Helping Patients blog for articles on clinical trials)

Clinical Trials

 

Clinical Trials 2.0: Reinventing Research For The Social Age

Clinical research is changing. No longer the sole preserve of clinicians and researchers, the Internet and new digital technologies are reinventing the way in which patients take part in the clinical trials process.

In the past decade there has been a revolution in how patients access health information. The Internet is increasingly the first port of call on our health-seeking journey. According to Pew Research Center’s Internet and American Life data, one in three U.S. adults have gone online to figure out a medical condition; 34% of Internet users have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog; and 18% of Internet users have gone online to find others who might have health concerns similar to theirs.

“Clinical research” is among the most-searched terms on the Internet; yet every year hundreds of trials are delayed or abandoned because they can’t recruit enough patients. Poor rates of trial recruitment are a major obstacle to the successful and efficient completion of clinical trials. Insufficient recruitment of study participants may result in losing the statistical power of a predictive conclusion, as well as prolonging the time it takes to get the trial drug to market. Oncology trials in particular are failing to meet enrollment goals, with most delays in conducting trials stemming from recruitment. 85 percent of cancer patients don’t know trials are an option. 55 percent of clinical oncology sites fail to get a single patient because they simply can’t find them and one third of trials fail to recruit a single patient1.

Given that enrollment into a clinical trial is frequently the best treatment option for patients with cancer, how might we make more patients aware of the benefits of clinical trials? Combining the power of new technologies with social networking and patient activation is our best chance at galvanizing the process of patient recruitment, and perhaps even an opportunity for us to completely reinvent the process of clinical research itself.

The world-wide web has opened a window to the world of clinical research. With the click of a mouse, we can now access information on the latest trials, download medical information to our portable devices, connect with researchers in real-time, and find other patients with the same condition. Dedicated websites such as the U.S government’s ClinicalTrials.gov site, and the World Health Organization’s International Clinical Trials Registry Platform (ICTRP), help patients easily find information on clinical trials. The launch of these sites represented a paradigm shift in clinical research; information that had once been closely guarded is now available to all. Some other note-worthy websites include The Center for Information and Study on Clinical Research Participation (CISCRP), a nonprofit organization dedicated to educating and informing the public about clinical research; and clinical trial recruitment sites, such as ClinicalConnection, TrialReach, EmergingMed and CureLauncher which exist to match eligible patients to appropriate trials. A new digital platform Cure Forward uses a patient’s uploaded genetic sequencing to connect cancer patients to clinical trials. The site, which is currently in beta, also offers cancer patients more information on the mutations and treatments available in “gene stories” specific to their genome.

Mobile applications can be downloaded from the Apple and Google Play Stores to give patients real-time access to current information about cancer clinical trials. This is opening up opportunities for better medical treatment and care, and allows those in regional and remote areas equal access to clinical trial information.  Some sites, such as the Novartis Clinical Trials website provide users with an interactive tool for finding relevant trials taking place near their location. A GPS search function allows users to see all the trials taking place in their country by location. For those looking further afield, the Novartis site features a global search function that displays clinical trials taking place in any country.

Popular social networking sites such as Twitter, Facebook, and YouTube are being used, alongside dedicated social media patient communities, to raise awareness and encourage wider participation in clinical research. The TrialX site encourages patients to send a tweet to @trialX, preceeded by “CT” describing the type of clinical trials they are seeking. Dr. Susan Love Research Foundation’s Army of Women Program (AOW) taps into the power of its social networks to mobilize research into the causes of breast cancer.

 

“The word Army, which means a large group of people united for a specific purpose, quickly and clearly describes who we are. The image of us all joining in a virtual Army to get this done is a powerful one” – Dr. Susan Love Research Foundation.

 

 

The traditional methods of advertising clinical trials through print media, brochures or poster displays, meant geographic limitations narrowed the pool of potential recruits. Using popular social networking sites, researchers can now accelerate the recruitment process by extending their social reach to take in a global pool of potential recruits. According to US hospital group, Mayo Clinic, social media is especially effective at recruiting patients for its studies into rare diseases. Social media and online networks could help researchers assemble large and demographically diverse patient groups more quickly and inexpensively than traditional outreach methods. “Patients with rare diseases tend to find one another and connect because they are searching for information and support,” says Mayo Clinic’s Marysia Tweet, M.D. “Studies of rare diseases often are underfunded, and people with these conditions are quite motivated.”

One such motivated patient is Katherine Leon, an SCAD (spontaneous coronary artery dissection) survivor, who was determined to find the cause of her disease, and prevent it from happening to others. At the time of her diagnosis, SCAD, a traumatic cardiac event that affects fewer than 200,000 Americans, was a poorly understood and under-researched condition. Physicians had no clinical studies on which to base treatment plans. Leon connected with fellow SCAD survivors through social media and used their collective voice to launch research at the Mayo Clinic. The study recruited 18 participants in less than a week, six more than could participate in the initial study of 12 patients. This rapid enrollment of participants through social networking served as proof of concept for future research studies to harness the power of highly-motivated patient communities. Leon credits social media as a key research accelerant. “Social media absolutely gets the credit for making scientific study of SCAD possible” she says. “In 2003, my cardiologist told me I would never meet another SCAD patient. It was just too rare. Today, I “know” more than 1,000 fellow survivors thanks to Inspire, Facebook ‎and Google. These patients are connected to the clinical trials immediately — at hello!”

Harnessing this dynamic combination of new digital and mobile platforms, social media, and activated patients offers an unprecedented opportunity for patients and researchers to find each other with greater speed and precision, which in turn can speed up the process of recruitment to clinical trials.

Peer-To-Peer Education

The ability to engage interactively through social media further enhances the benefits to patients. Reading information in a brochure doesn’t compare to the ability to interact and ask questions in a social networking site. What is it really like to take part in a clinical trial? Would you need to travel? Will it incur any personal expenses? What kind of side-effects might you have? Trial sponsors can respond in real-time to these questions, thus speeding up the recruitment process. In addition, patients already enrolled on the trial, can provide personal insight into what is involved. One patient, who has participated in two Phase 1 clinical trials, said that he was motivated to sign up for them, by reading others’ stories online. Hearing about the experiences of others who had participated and “come out the other side” encouraged him to take part.

Sometimes there can be an open sense of distrust about the nature of clinical trials – a fear on the part of some that they will be treated as a “guinea pig”. For patients who may be wary of research agendas (particularly when pharma-led) peer-to-peer education is a vital ingredient in building trust and confidence in clinical trials. Patient advocate, Stacey Tinianov believes “there is great value in patients and caregivers leveraging the connected platforms to educate themselves on the benefits and realities of clinical trials. Learning patient to patient is often more accessible for a variety of reasons, not the least of which is a certain trust”.

Moreover, social networking has the potential to empower patients and care-givers with a greater sense of control. All too often, patients who face serious illness can feel isolated and powerless; joining an online community can help enormously. By exchanging coping tips, offering encouragement and support, and sharing information on the latest clinical research, patients feel a greater sense of agency. Breast cancer survivor Diane Glassmeyer, took part in a Sierra-Stanford study of the effectiveness of support groups conducted via online video. The randomized clinical trial was designed to help researchers determine whether this type of video-mediated support group improves the well-being and quality of life of breast cancer patients who live in rural areas. Glassmeyer described the Skype Support Group as “an amazing experience to be able to see and talk to everyone in the group each week from all over the state”.

The role of the care-giver must not be overlooked in peer-to-peer support. Half of health information searches within the U.S. are on behalf of someone else. In the case of late stage oncology, or a paediatric trial, the caregiver’s involvement is imperative. We need to focus more on establishing communication and maintaining an on-going relationship, not just with the study participant, but with all involved in care-giving for the patient. Patient advocate, Andrea Borondy Kitts, a care-giver for her husband with lung cancer, says: “For the patient (my husband did not go on-line but I did) it was great to have technical help and sharing of latest research. I found out about Lucanix on the Inspire website and pursued it. When I needed to help my oncologist with the process of getting FDA approval for individual patient compassionate use, one of the Inspire members had the whole process documented and shared it with me”.

When Borondy Kitts’ husband was considering a clinical trial, she was able to get information from people with lung cancer about their experience, including side effects, with an experimental drug.  “When my husband had horrible side effects to his supposedly gentle chemo in Phase 3 clinical trial,  (Alimta /Pemetrexed), I found out from social media that many others had similar experiences and I also got tips on how to manage the side effects. My oncologist did not have enough patients in the trial to have observed these effects”.

 ePatient Reported Outcomes

Capturing Patient Reported Outcomes electronically (ePRO) through the web or mobile devices, offers a way to interact with trial participants, while also capturing critical data. Although patients for the most part face little or no restrictions on reporting their outcomes via social networking sites, there are some concerns about how this might affect the trial’s validity. Patients self-reporting on their trial treatment online and comparing notes with others may potentially jeopardize the trial. The exchange of personal experiences whilst enrollled in clinical trials can lead to patients (or any researchers on the same social network) to inadvertently “unblind”* themselves, leading to knowledge of treatment allocation. Concealment is crucial for unbiased reporting of results, and disclosures by one patient might unintentionally distort another patient’s awareness of their own symptoms, potentially skewing data reporting and potentially invalidating study results. The intersection of free speech, social media, and clinical research is still unchartered waters. Borondy Kitts, believes that while guidelines can be implemented to safeguard data integrity in a blinded trial, “for unblinded trials there should be very few limits on what can be shared.”

Patients Are Doing It For Themselves

The communication process which traditionally flowed from pharmaceutical companies to physicians to patients has been transformed by social media. Patients, who have traditionally relied on their doctors for information about the latest clinical research, are now realizing that information may be more readily found in their online patient communities. After she progressed following chemotherapy and radiation, Janet Freeman-Daily, a lung cancer survivor, took it upon herself to do her own research.

*A blinded study is a study done in such a way that the patients or subjects do not know (is blinded as to) what treatment they are receiving to ensure that the results are not affected by a placebo effect (the power of suggestion).

She found a molecular testing trial listed on ClinicalTrials.gov, and contacted trial sites until she found one accepting patients. The University of Colorado Cancer Center (UCCC) agreed to test her existing biopsy samples. Unfortunately, all her tests were negative.  However, she learned about more options online.  “Another patient told me I fit the profile of patients who had the ROS1 translocation,” said Freeman-Daily. “I was relatively young, had adenocarcinoma, was never a smoker, and tested negative for the three most common mutations.  He told me about the ROS1 trial, which he was in, and sent me the journal article with initial results as soon as it was published. However, my home hospital had not heard of ROS1, and did not know how to test for it.”  After she progressed following more chemo and radiation, Freeman-Daily contacted UCCC again and learned they had recently developed a test for ROS1.  This time her tissue tested positive, and she entered the ROS1 clinical trial in Denver.

Kathi Kolb describes the process of searching for a clinical trial after her diagnosis of cancer: “I searched the database of the National Cancer Institute and found a Phase 2 clinical trial to test a new medication to treat cancer-related fatigue in people with breast or prostate cancer. I had been doing a lot of research on the subject because I was suffering from horrible fatigue myself. Once I found a trial that fit and was close enough for me to get to, I followed the links provided and researched the cancer treatment center where it was taking place, as well as the clinicians in charge of the study. I was able to make initial contact with them by email. It was a really good experience overall.”

Janet Freeman-Daily, Kathi Kolb, Andrea Borondy Kitts, and Katherine Leon are part of a growing number of ePatients, empowered by the Internet and emerging new technologies, who are leveraging their online communities to drive and support the research agenda. From providing input into study design protocol, to raising awareness of the value of clinical trials and recruiting trial volunteers, patient influencers play a key role in accelerating the new research paradigm. AnneMarie Ciccarella, a patient advocate who serves on the Love Foundation Army of Women (AOW) Scientific Advisory Committee, believes patients have a valuable role to play in trial design. “The thing that interests me the most is trial design and having patients part of that process” she said. “Some grants require a patient advocate on the proposal. In some cases they are actively involved in the study design; in others, the researchers scramble to find an advocate before the submission deadline. I’ve participated as an advocate on a funded grant, possibly at the top of the list of things that mean the most to me. It’s about bringing patients and PIs [Principle Investigators] to the table when the questions are being formulated – a step ahead of actual trial design”.

The Future Is Social

 Ciccarella also serves on the advisory board of CureClick, an online platform which uses the power of crowdsourcing to share clinical trial information. As part of a group of key patient leaders, she helps recruit trial participant across all diseases. This new model of leveraging trusted patient leaders to educate their online communities about the benefits of clinical trials can do much to improve trial recruitment goals. CureClick ambassador Debbie Woodbury, explaining why she joined its advisory board, said: “I started working with CureClick early this year and serve on its advisory board because I feel that too often cancer patients find themselves in the curious situation of having too much, and too little, information. Many patients I’ve spoken to are overwhelmed with treatment decisions, and yet receive little to no information concerning clinical trials. The beauty of CureClick is the ease with which plain language information is shared peer to peer on social media, resulting in greater participation. It’s a win-win for everyone and I’m proud to be a part of it”.

The need for a faster and more globally scalable approach to trial recruitment, planning and design, is clear. To address challenges such as public awareness and understanding of clinical trials, increased competition for patients and decreased effectiveness of traditional advertising, requires new solutions. Social media are a key part of the solution. Social media offers patients greater accessibility and convenience of communication and information. For researchers, social media offers a unique opportunity for innovative trial recruitment modalities, increased efficiency and accelerated research outcomes. People are social creatures by nature; harnessing our innate desire for connection, to new information, social and technology platforms is the best chance we have to drive the next generation of research forward.

Refs

Malorye A. Can web 2.0 reboot clinical trials? Nature Biotechnology 27, 895 – 902 (2009).

 

 

 

Breast Cancer Survivor – Exploring alternative treatments and clinical trials

Diary Entry

To all my breast cancer sisters….as I found out when diagnosed with breast cancer in January 2012, we’re Breast Cancer Diaryall part of a big sorority. My cancer was found from my yearly mammogram. I couldn’t feel any lump and neither could my doctor. Before making this too long let me just state the steps of my journey: my prayers became very specific to this news; I went back for an ultrasound – definitely found something suspicious; next met with surgeon, she ordered an MRI & amp, biopsy; result was a stage 1, invasive ductal carcinoma (scary sounding); surgery was recommended, also was told I now had a team of doctors I would be seeing (radiologist, medical oncologist and nurse navigator).

That’s the short story if you want to stop now that’s OK. However, I do want to mention the two newer medical treatments I was able to utilize after surgery – Savi catheter implant for radiation (1 week of treatments vs the normal 5-6 weeks of radiation) and Oncotype.DX test to determine if I would really benefit from chemotherapy. There’s lots of information available on both of these treatments, and of course discuss them with your doctor. From my experience I would recommend both of them if the pathology results are such that you meet the requirements for these treatments.

So the process began, I had at least a 1″ stack of papers to read on breast cancer treatments, types of surgeries, chemo, radiation, etc. At first I didn’t want to read any of it but after a few days I started digging in since I would have to make decisions particularly regarding what type of surgery – lumpectomy or mastectomy, pros & cons on both. I had about two weeks to make up my mind – I read, read, read & prayed, prayed, prayed (my husband was my partner in all my decisions as well). My choice was for a lumpectomy (called breast conserving surgery)based on the small size of my cancer & the location, and the fact that if after surgery the results showed it was in the lymph nodes I could have a mastectomy.

There’s no doubt that all of a sudden our life was focused on the doctor’s visits, education, patience and keeping down the anxiety while waiting for the day of surgery. The day of surgery finally came, prior to the actual surgery I had to have two procedures done; two wires implanted (with ultrasound guidance to help pinpoint the cancerous area for the surgeon, and a shot of dye injected in the breast which allows for the surgeon to pinpoint the sentinel lymph nodes (the first ones that would show if the cancer was on the move). The surgery went well and I went home that same evening to wait for the pathology reports which took two days. I was very anxious, of course, for that next appointment wondering what the report would show and knowing my next steps in treatment would be determined by those results. I was Blessed! I had no cancer cells in the lymph nodes and the margins around the cancer were clear. The surgeon had put in a temporary spacer during surgery hoping that I would be a candidate for the Savi catheter. My results did meet the requirements, so during this appointment she took out the spacer and inserted the Savi catheter. This meant then that I would see the Radiologist the next day and the radiation treatments would take place the following week – Monday thru Friday, twice a day, and that would be all the radiation treatments I would have.

It was almost two weeks after finishing radiation that we met with the Medical Oncologist and again, I was BLESSED, the test (Oncotype.DX) showed that I would not benefit from traditional chemotherapy. The doctor did want me to take a 1mg pill daily (his recommendation for me was Arimidex – one of several chemo drugs available) for 5 years. There are possible side effects with all drugs and you can switch to one of the other drugs if needed – everybody is different and you have to work with your doctor to determine what is best for YOU!

I have made this a very long entry, but I wanted to put this down for my own record of this cancer journey, and if the information is helpful to anyone else I would be very happy. I would welcome any questions regarding any part of this journey – diagnosis, treatment, surgery, post-surgery decisions, etc.

My final thoughts would have to be that the most important part of this journey was the deep gratitude I have for my husband (a great caregiver and partner throughout this entire 3 month trial), my children, son & daughter in-law, my grandchildren and all the prayer partners whose prayer support was so strongly felt and deeply appreciated. I was never alone, the Lord was always with me!

I would love to offer my support to any one facing or already on their breast cancer journey!

 

Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a cancer diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

 

A Patient Advocate Speaks Out About Clinical Trials

Obstacles and Progress in Clinical Trials

Laura Cleveland

Laura Cleveland is a 18 yr CLL patient, an impassioned patient advocate and a peer reviewer of late phase cancer clinical trials for the NCI Institutional Review Board (IRB), with focus on trial design, accrual issues, regulatory mandates and informed consent.

Cleveland has 12 years experience in designing, evaluating, and reviewing clinical trials, and I was interested to get her thoughts on the clinical trial process, obstacles that patients face and any recent progress being made in the clinical trial arena.

Obstacles to Clinical Trial Enrollment

It is no secret that clinical trials face accrual problems. Half of all phase III clinical trials close because of insufficient accrual with only 2% of cancer patients participating. In Cleveland’s opinion, some of the biggest obstacles are:

  • The myth that clinical trials are purely experimental and that the subjects are treated as “guinea pigs”. Cleveland explained that, in trials, patients are followed much more closely than they would be in normal treatment situations and that all standards of care actually evolved from clinical trials.
  • Logistics – Enrollment is often delayed due to eligibility criteria or rules and regulations concerning testing and screening.
  • Randomization and the fear of receiving “placebos” instead of cancer medication. Cleveland explained that placebos are rarely given in cancer clinical trials. When drugs are compared, the experimental drug is compared to the Standard of Care, She went on to say that there is even a push to remove randomization from certain trials and that there are currently single arm clinical trials available.
  • Cost – If insurance does not cover the costs of extra tests and doctor visits, it can be costly for the patient. There are organizations that help with these costs, but often the patient must bear the burden of significant cost outlay.

I asked Cleveland what the one thing is that industry/government can do to make the clinical trial process easier for patients. She had a very simple 3 word answer:

“Pay for it”

Progress Being Made in the Clinical Trial Process

When asked what progress had been made recently in the clinical trial process, including enrollment, navigation and process in general, Cleveland had several comments:

  • The patient materials are becoming more understandable and easier to read. The documents are being “translated” into plain language, the informed consent form is getting shorter and less complicated. Cleveland has been working with the National Clinical Trials Network on this for the past several years.
  • Patient-friendly clinical trial results are being published so that patients can read about these trials and understand them. Cleveland has been working with the Alliance for Cancer Clinical Trials on this.
  • Cooperative Groups have been working on ways to change the consent process and clinical trial protocols. These groups get together and discuss strategy to improve the whole clinical trial process to make accrual more attractive and patient-friendly. This is a slow process but encouraging steps are being taken. Cleveland said that patients are given a clinical trial “packet” that often, they do not understand. She further explained, “There needs to be a patient-friendly summary that the patient can read and easily understand before they even attempt to read the Informed Consent form. This summary needs to be in plain language and outline the clinical trial that they are considering.” Apparently, this type of summary exists for a few clinical trials, but it needs to be the rule rather than the exception.
  • Clinical Research and Clinical Trials need to be in the vernacular. They need to become everyday words and concepts. Social media is helping in this effort. Tweets and Facebook posts help with awareness. But there needs to be more effort in this direction. Possibly, clinical research staff could visit Middle School or High School and talk to the science or health classes about trials. Children can be great advocates of causes and could bring the word home to siblings and parents. Breast Cancer groups have done a great job for breast cancer awareness; they could really help by spreading the word about breast cancer clinical trials and clinical trials in general. Much, much more needs to be done in this area. Cleveland summarized,

 “As far as getting the word out about clinical trials, it’s just not there.”

In closing, Cleveland had several words to say to patients about self-advocacy.

“Get a second opinion! Seek out a specialist in the specific disease area that you have. Find out who is doing research in that area and contact them. Use all resources available to you. You must be your own self-advocate.”

Clinical Trial Process: A Physician’s View

Interview With Dr. Jeff Sharman

Dr. Jeff Sharman is Medical Director of Hematology Research at The US Oncology Network, one of the largest networks of integrated, community-based oncology practices in the US. US Oncology includes over 1000 physicians practicing at more than 350 sites in 19 states, and treats more than 750,000 patients annually. Dr. Sharman is also on the Patient Empowerment Network Advisory Board.

The US Oncology Research Network has enrolled over 60,000 patients in about 1,400 clinical trials so far. The website offers a trial finder that will connect you with a US Oncology practice near you that has clinical trials available.

Dr. Sharman is convinced that although research adds to a physician’s workload, it enlivens a practice and adds to productivity. In a video on the US Oncology website, Sharman says US Oncology found that physicians that recruit one patient per month on average are 70% more productive than their counterparts.

I asked Dr. Sharman several questions about the clinical trial process and he was kind enough to answer.

1. From the physician perspective, what are the 3 biggest obstacles in the clinical trial process?

“Regulatory oversight has become too burdensome.  In major academic centers and cooperative groups, it can literally take YEARS to open some studies – let alone accrue the study and determine the results.  Often the key scientific questions have changed before the study is executed and the results are no longer relevant by the time they are answered.  It is a case of “death by good intentions” to see such caution in clinical trials, but unfortunately, patients are dying while studies are acquiring the requisite signatures to get started.  In community practice, we are able to cut start up time to a small fraction of our academic counterparts, but the oncology practice environment these days makes it hard to fully engage in both clinical medicine and research.  Eligible patients are often not enrolled in clinical trials that are available at their own site because physicians are not able to slow down enough to connect the dots.”

2. What is the one thing that industry/government can do to make the clinical trial process easier? Why don’t they do it?

“Reduce the barriers to enrolling patients on clinical trials at the Medicare level and possibly even provide greater incentive to sites for quality research participation.  Medicare Advantage plans until recently had regulations that actually INCREASED the cost to patients to enroll on clinical trials.  Patients had higher copay (went from 10% to 20%) AND they lost maximum cap guarantee.  It was a powerful DISINCENTIVE to clinical trial participation.  That has been improved however Medicare is currently adopting numerous quality measures in reimbursement models to practicing physicians.  Research engagement could easily be included in these quality measures and would powerfully encourage participation.  Policies that are adopted by Medicare are often followed by major insurance carriers so there could be a spill over effect.”

3. Who are the major influencers in this arena? (This includes patients, advocates, industry, government and HCPs)

“Right now, virtually all power resides with the pharmaceutical companies.  They are the only entities with the budgets to sponsor clinical trials.  Government funding and grant agencies probably account for less than 10% of current clinical research in oncology.  Government could create tax incentives for pharmaceutical companies to provide research opportunities to investigators for more investigator initiated studies.”

4. What are the major positive changes that have been made to the clinical trial  process in the past 2 years?

“The agents used currently in clinical trials are based upon a far more detailed understanding of cancer biology than the cancer drugs of only 10 years ago.  With greater precision, drugs are often more effective with fewer side effects.  Furthermore, we are far more capable of understanding the unique biology of an individual’s cancer.  In the past, we might just call a disease by a specific name, but now we can often find the unique molecular heterogeneity within a single patients cancer.  This allows us to explore investigational therapies that may be unique to an individual patient.”

5. What is US Oncology Network doing in the way of clinical trial awareness for doctors and patients?

“Our network will enroll over 4000 patients to clinical trials this year alone.    US Oncology is a management organization for many practices and through thoughtful leadership enhanced the role of research within many practices.  US Oncology research has dramatically improved relationships with sponsors and sites to bring the best clinical trials to patients.  I could talk for hours on this.”

Thank you, Dr. Jeff Sharman and US Oncology!

Please discuss your treatment options with your medical team.

Spotlight On: Cancer Support Community: A Great Resource

Spotlight

The Cancer Support Community is an international non-profit organization dedicated to providing support, education and hope to cancer patients. CSC’s website has a wealth of information and resources available, including links to advocacy organizations, online support groups and discussion boards and a Cancer Experience Registry where you can obtain information about your specific cancer and help with research in that area.

I thought it worthwhile to copy the CSC information for two helplines that CSC offers to any cancer patient. The first helpline, called Open to Options® helps cancer patients make decisions about treatment. The second helpline, called Cancer Support Helpline® is for patients, caregivers and healthcare professionals who are looking for information or support. Please avail yourselves of these excellent resources from the Cancer Support Community!

Open to Options – Patients

Making a decision about cancer treatment can be an overwhelming experience for many people. Open to OptionsImportant decisions need to be made about treatment for new or recurrent cancer as well as ending treatment. Sometimes it is hard to know what questions to ask the doctor. One proven strategy for getting the most out of your visit is to be as prepared as possible.  Having a written list of questions can help you feel more organized and comfortable in asking the questions you need to have answered as you work together with your doctor to make a decision about which treatment is right for you.As you look at all the treatment options with your oncologist and your family, you will need to determine what you can realistically expect from treatment. Talk with your doctor to better understand your type and stage of cancer as well as what your doctor feels is the best goal of treatment for you. A goal of treatment may be cure, slowing or controlling tumor growth, or extending your life while maintaining quality of life. Some cancer treatments are designed to control pain and other symptoms when a cure is not possible. Surgery, chemotherapy and radiation can have difficult side effects, so it’s important for you to weigh the benefits and the challenges, and make a decision that is best for you. Cancer treatments today have come along way from years ago. There are many medications that reduce side effects and make it possible for you to continue to work or keep up with your usual activities.

The Cancer Support Community has a decision support counseling program called Open to Options® that can help you prepare for an appointment in which you will be making a treatment decision. Using this service can help you get the most out of your visit with the oncologist and help you talk more openly with your health care team about the things that really matter to you the most in relation to your cancer treatment. In a brief one hour session, an Open to Options® Specialist can help you develop a personal list of questions and concerns that will help you and doctor explore your situation and develop the best treatment option.

Tips for Treatment Decision-Making

  • Learn about your cancer and treatment options. Try and understand as much as you can about your diagnosis and the possible treatments. There are excellent booklets and online information available through the Cancer Support Community, the National Cancer Institute and many other organizations to help you get more informed.
  • Bring someone else along.  Bring a family member or friend along to listen along with you, take notes and keep track of the options.
  • Talk about your decision with someone you trust. It can be helpful to talk through your ideas and concerns with family, friends, clergy or health professional. Some people find that support groups are a useful place to gather information and suggestions from others.
  • Consult guidelines or other decision-making tools. The American Society of Clinical Oncology (ASCO) and other cancer organizations publish guidelines and treatment decision-making tools to help doctors and patients understand various treatment. In addition, some cancer centers offer sophisticated statistical tools you can use with your doctor to help determine the best treatment option based on your personal medical information. Always use treatment guidelines and other tools with the help and interpretation of your doctor.

In addition to the Toll-Free Cancer Support Helpline, 1-888-793-9355, Open to Options is also available through these Cancer Support Community affiliates. Find a CSC affiliate near you and call today for an appointment!

 

Cancer Support Helpline®

Whether you are newly diagnosed with cancer or a long-time cancer survivor or caring for someone with Cancer Support Helplinecancer, or a health care professional looking for resources, CSC’s TOLL-FREE Cancer Support Helpline is open Mon-Fri 9 am- 9 pm ET.You are welcome to call anytime.  If you receive a recording, please leave your name and contact number and one of our counselors will call you as soon as possible.Please call 1-888-793-9355 and a CSC Call Counselor will be happy to assist you with any of the following concerns:

  • Information about local, regional, or national resources
  • Finding a Cancer Support Community program near you
  • General information about the Cancer Support Community and its services (in-person, online and by phone)
  • Help in talking about some of the emotional and social worries that cancer sometimes brings into our lives
  • Information about, and assistance in, ordering Frankly Speaking educational materials
  • Help finding a nearby support group, online support group or discussion group to connect with others
  • Short-term cancer counseling and emotional support
  • Open to Options™ treatment decision support counseling
  • Make a donation to the Cancer Support Community
  • Access to CancerSupportSource™ online distress screening program
  • Live web chat available during call center hours – CLICK HERE TO CHAT NOW!
Disclaimer
The Cancer Support Community provides this information as a service. Publication of this information is not intended to take the place of medical care or the advice of your doctor. The Cancer Support Community strongly suggests consulting your doctor or other health professional about the information presented.

 

Digital Tools for Clinical Trials

There is progress being made in the clinical trials arena!

The Apple Research Kit was introduced several months ago and is making headway in the world of clinical trials, facilitating clinical trial enrollment, navigation and process for patients.

The Apple Research Kit is an open-source software framework for collecting clinical trial data. Researchers and developers of clinical trials are encouraged to use the kit to develop apps for patients who will use their iPhone to contribute data and participate in clinical research.

Patient Recruitment Made Easy

Several major institutions have developed apps using the kit for clinical studies on asthma, breast cancer, cardiovascular disease, diabetes and Parkinson’s disease. Other providers and developers are sure to jump on the band-wagon as recruiting patients by iPhone is much easier and user-friendly than posting fliers or sending out applications by mail. The major institutions that developed the first apps say that instead of the national year-long effort to recruit patients, they got thousands of volunteers within a day of launch.

Digital Tools for Clinical Trials tweet

Besides helping to recruit patients, ResearchKit could also help solve other problems in clinical research.

Objective Data Gathering

Apple Research Kit

iPhone, with the user’s consent, can gather objective data with advanced sensors like an accelerometer, barometer and gyroscope. Apple is introducing other quantifiable metrics, like an app that requires patients in a Parkinson’s trial to regularly complete touchscreen exercises that would measure tremor incidence. And in the future, other sensors or apps will become available that could track all sorts of metrics useful for clinical research. And what a boon for patients! They can use metrics and the iPhone to track data automatically and easily, certainly reducing visits to a provider and helping patients in more remote areas by making participation in a trial much more accessible.

Frequent Data Gathering

Most iPhone users keep their iPhone close to them at all times, ensuring that data is gathered consistently, rather than at scheduled hospital visits. The data can be gathered instantly and sent automatically as long as the user consents.

Concerns About Privacy, Ethics, and Compliance

Some have questions about information privacy or the ethics involved in recruiting patients remotely. Can Apple and others keep the information gathered private?

And who is to say that all participants are over the age of consent when there is no one checking IDs at the door?

The ResearchKit is presently available only to those with an iPhone. These people tend to be more wealthy individuals – is this a problem? Are these the patients that clinical trial researchers want to recruit?

And currently, there is no easy way for participants to pose questions.

These concerns and others are certainly problems that Apple is aware of and is working on.

All in All, A Step Ahead for Clinical Research

With all the iPhones in use by countless patients all over the world, there is a trove of excellent data that certainly can be useful for clinical research. Apple and the clinical researchers and developers working with the ResearchKit are trying to help patients by gathering and analyzing this data. And with sensors and trackers available at their fingertips, patients can participate in research more easily than before.

Fabio Gratton, CEO of CureClick, a crowdsourced clinical trial recruitment platform, believes ResearchKit is a promising tool to help the cause of clinical trials:

“66% of trials today fail to meet recruiting goals, and 80% fail to finish on time due to both recruiting and operational challenges. That is why we created CureClick, which is the first clinical trial recruiting platform to use crowdsourcing through social media to identify patient volunteers. We believe that ResearchKit is another innovation that can help streamline the trial process, both in identifying patients and gathering data from participants in an efficient and real-time basis”.

“ResearchKit is a high-potential platform,” says Mikey Wills, CureClick’s lead designer, “But it still needs strong front-end development to make it a viable tool for clinical trial sponsors.”

Last month CureClick was tapped by Thread Research, another southern-California digital health firm that has been working closely with Apple to develop ResearchKit-powered apps, to assist in the development of the PRIDE Study app in partnership with UCSF, helping to create the largest database yet of the physical, mental and social issues that uniquely affect gay and transgender men and women. To date the app has helped recruit over 15,000 study participants.

The goal, through this partnership, is to address the general challenges the industry faces in getting patients to participate in the clinical trial process.

Consider Clinical Trials!

And perhaps #mHealth will lead the way to more awareness about clinical trials. More and more data is being collected via mobile phone. Many are used to using phones with fitness apps, nutrition apps, using their phones to track how they exercise and how they eat. If phones can help patients enroll, navigate and take part in clinical trials – so much the better! The more patients that consider clinical trials, the more research will progress and the more patient outcomes will improve.

Sources:

http://cureclick.com/news/the-next-disruptor-of-clinical-trials/

https://www.apple.com/pr/library/2015/03/09Apple-Introduces-ResearchKit-Giving-Medical-Researchers-the-Tools-to-Revolutionize-Medical-Studies.html

http://thehealthcareblog.com/blog/2015/03/12/apple-research-kit-is-open-source-but-is-it-open/

http://www.engadget.com/2015/03/12/apple-researchkit-sign-ups/

http://www.ibtimes.co.uk/apple-wants-collect-your-dna-deliver-it-your-iphone-1499897

http://www.theverge.com/2015/3/10/8177683/apple-research-kit-app-ethics-medical-research

http://www.forbes.com/sites/dandiamond/2015/03/09/apple-now-wants-to-cure-cancer-and-it-wants-you-to-help/

 

 

 

 

Does Patient Empowerment Lead to Better Cancer Treatment Outcomes?

According to a study presented at the World Congress of Psycho-Oncology (WCPO) in late July, 72.3% of patients diagnosed with cancer defer their treatment decisions to their doctor. While this number is not surprising, it is cause for concern.

With a diagnosis of cancer comes a barrage of possible options for treatment. Often, choosing between these options can be overwhelming and intimidating, especially as there is typically not a clear answer and many uncertainties in terms of potential outcome.

How can we help patients navigate these tough decisions, such as whether or not to get a second opinion or participate in a clinical trial? How can we help patients gain the confidence they need and help them feel empowered and in control as they discuss treatment options with their healthcare team?

 Helping patients self-advocate

A survey done last year by Patient Power of 1295 chronic cancer patients showed that 73% of those
surveyed said the health information they found online helped them feel more confident and more in control of their health (see infographic at the end of this post). Learning about your illness from experts and from other patients can be a rewarding and empowering experience.

Organizations such as the Cancer Support Community (CSC) and others, including us at the Patient Empowerment Network (PEN), offer programs to help patients stand up and advocate for themselves and become informed so that they, in partnership with their heath care team, can make the right decisions for them.

Programs and resources designed to empower patients

The study presented at WCPO found that educational workshops, such as the CSC’s Frankly Speaking About Cancer program, that aim to educate and empower those affected by cancer can have dramatic outcomes in terms of patient confidence in making treatment decisions. In fact, the study found that as a result of attending a Frankly Speaking About Cancer workshop, 85.5% of respondents reported having increased confidence in discussing treatment options and making treatment- related decisions with their health care team. (Harvey, et al 2015)

 

Live audience at a recent town meeting for patients

Live audience at a recent town meeting for patients

PEN’s Town Halls and Patient Café programs give patients and carers tools and resources to discuss treatment options, including clinical trial participation, with their doctor and their family and make informed and empowered decisions throughout their illness.

Participant surveys from these meetings are overwhelmingly positive. Over 80% typically rate the event as good to excellent, and many write in emails like the following:

 

 

“Thank-you for all you do and have done to help those of us with CLL better understand this journey we are traveling.   The information you give is such a great help when I talk with my doctors and just for peace of mind in better understanding what I am facing.  Mary”

Answering your questions about clinical trials

In addition to helping facilitate conversations about treatment decisions, PEN offers a comfortable and convenient place to find user-friendly information about clinical trials. One of our goals is to help you understand the process by introducing you to people just like you who have participated in, or are considering participating in, clinical trials. We also offer opportunities to hear from doctors, nurses, caregivers, caseworkers and others about their perspective on what it means to participate in a clinical trial.

Patients helping patients

"Powerful Patients" at a recent town meeting

“Powerful Patients” at a recent town meeting

There are many resources available to help patients navigate their journey and we encourage you to take full advantage of them. If you can’t find what you need, don’t hesitate to reach out to let us know how we can better help you. And, most importantly, please remember, you are not alone. We stand beside you as a community of patients helping patients.

 

 

 

 

Patient Power Infographic

Sources:

http://www.cancersupportcommunity.org/General-Documents-Category/Research-and-Training-Institute/Posters-and-Presentations/Factors-Influencing-Treatment-Decisions-Among-Cancer-Patients.pdf

http://www.patientpower.info/about/survey-results-2014

 

 

Metastatic Melanoma Patient Diary Entry

Diary Entry – Patient With Male Breast Cancer and Melanoma

I’m 72 and have lived most of my life in the Midwest, particularly Michigan, with forays to East Coast and West (New York, California) and two years in Sao Paulo, Brazil with lots of visits afterwards. Profession has been education on middle, high school and college levels as teacher and administrator. I decided when informed of my most recent illness to finally retire from university teaching in a grad teacher education program.

My first cancer was male breast. One of about 1400 a year in the U.S. Stage 2, no recurrence since diagnosis in 2003. Never worried about it returning. Second was metastatic melanoma, Stage IV, this year. Total surprise. I skipped Stages I-III with an unknown primary. Landed in my lung. All removed with a lobectomy (rhymes with my previous lumpectomy). I am now NED to hear this week after PET scan and brain MRI whether that continues to be true. I’m in the watch and wait category for further treatment–probably surgery first, then ipi*.

I don’t know how I am going to do with the program of 3 month scans. I do know I will have to live my life in 3 month chunks, but, of course, do not know how that will work psychologically. I have a very supportive wife, but she worries, too, of course.

April 2013

Had my surgery last Tuesday, back home late Thursday. Watching a good deal of snow out the window. I don’t mind at all not being out driving in it. It’s nice to be snug. We’re a snow belt city, one of the top fifteen or so in the country for total snow fall. I’ll have to look that up. Average winter just about 70 inches. I got into snowshoeing a couple of years ago at a buddy’s place in Sun Valley. Can’t make the reunion of the crowd this year.

Recovery is coming along. No exercise for another week. Then back in the pool, I hope. Can’t even walk around the block (not today, of course). Tomorrow I can drive. MelanomaDiary

“I’m feeling more and more optimistic about the melanoma. I think that’s better than looking around the corner. I have a lot going for me right now, and I’m convinced the ipi is working. Just not sure how well. I heard a doctor on a webinar yesterday say that those for whom ipi really works are like people who win the lottery. Why me? But it is you, and you’re done with melanoma for life. I’d like to be one of those 15%. I’d rather be that person than win the real lottery, no matter how big the payoff.”

As of August 2015 – Still thriving!

 

*”Ipi” refers to ipilimumab, a new monoclonal antibody drug that is being used currently in numerous melanoma clinical trials. Ask your medical team about these trials, or you can browse trials by using various trial finders such as the ones on cancer.gov or Melanoma Research Foundation.

Read more about patients and their experiences with clinical trials at www.TreatmentDiaries.com.  Real people, actual stories, shared in private so you can be more social about your health.