9 posts from January, 2014

PatientsLikeMe Out of the Office: Priya Raja talks about cervical cancer awareness

Posted January 30th, 2014 by

My mentor, Professor Lynette Denny, and I

Hi there everyone, my name is Priya and I work as a research assistant on the Health Data Integrity Team at PatientsLikeMe!  Given that it’s cervical cancer awareness month, I wanted to share with you all a global perspective on why screening can be so important. While a Pap smear is something that most women receive during routine visits to the gynecologist, this screening test is unfortunately out of reach for many women around the world. The consequence? Women can show up at the clinic with cervical cancer that has spread throughout their body. And in countries that are resource-strapped for treatments like chemotherapy and radiation therapy, the outlook for these women is, sadly, often very grim. The quandary, however, is that a Pap smear is a very low-cost test that can detect cancer up to ten years before it happens. Even more, being screened just once can reduce the likelihood of having cancer 70% to 80%, and early detection can guarantee nearly a 100% chance for a cure.1

 

 

Patient room where I did interviews

 

As a passionate advocate for women’s health and disparities in cancer care, I was inspired to spend three and a half months speaking with low-income women diagnosed with cervical cancer at a hospital in Cape Town, South Africa—where a Pap smear is a luxury for most women. In South Africa, cervical cancer is the second most fatal cancer in women and is known particularly as a ‘killer of poor women,’ because those of low-income status are the least able to access this screening test.2 South Africa’s unique history with Apartheid, race and socioeconomic status remain linked twenty years later, and the voices of these women remain largely unaccounted for. When I interviewed these women, it was very important to me to have them be the center of this research, and to understand how their own unique journey with cervical cancer—from the first symptoms to finally getting treatment—fit into the greater contexts of their lives and values. I found that a variety of factors contributed to the fact that these women appeared at the hospital too late, but that it mostly boiled down to the interaction between providers and patients.

 

 

Groote Schuur Hospital

We know that patients and providers don’t always speak the same way about illness and disease. For these women, many of whom were going to a hospital for the first time, when providers used words like biopsy, cervical cancer, or radiotherapy, it was a foreign language to them. Instead they described these experiences as “cutting a piece,” or “cancer on the mouth of the womb,” or “being put under a machine.” These are but a few examples of the communication disconnects that led providers to disregard their patients’ inner sense that something was wrong, which led to patients being denied care. Furthermore, some providers weren’t equipped to diagnose cervical cancer, instead mistaking it for an infection, and they repeatedly turned away their patients with antibiotics or pain tablets.

I used the stories of these women to create a set of recommendations for providers, and it turns out that getting these patient voices front and center worked! Recently, my recommendations were implemented by the Department of Health in the Western Cape Province at the same hospital I worked at. They are now preparing to run workshops for providers in the greater Cape Town area to more effectively train them not only on how to identify cervical cancer, but also how to speak with and teach their patients about cervical cancer in a way that makes sense to them.

PatientsLikeMe member PriyaRaja


1 Mosavel, Maghboeba, et al. “Cervical cancer attitudes and beliefs—A Cape Town community responds on World Cancer Day.” Journal of Cancer Education24.2 (2009): 114-119.

Denny, L. (2006). Cervical cancer: the South African perspective. FIGO 26th Annual Report on the Results of Treatment in Gynecological Cancer. International journal of gynaecology and obstetrics: the official organ of the International Federation of Gynaecology and Obstetrics, 95, S211.

2 Menaker, D. (1995, August 22). Apartheid’s cruel legacy: Death by cervical cancer. San Francisco Chronicle. Retrieved from http://www.sfgate.com/news/article/Apartheid-s-cruel-legacy-Death-by-cervical-cancer-3133619.php


Living with hope – An interview on AKU with Alycia and Nate

Posted January 27th, 2014 by

We’ve had the pleasure of talking with and featuring many PatientsLikeMe members on the blog over the years, but Nate is the youngest by far. He’s just 5 years old and is living with Alkaptonuria (AKU), a rare metabolic disease, sometimes called Black Bone Disease. Recently, we had the chance to chat with his mom, Alycia, who spoke with us about Nate’s experiences with AKU and her role and philosophy as his caregiver.

To get started, what would you like everyone to know about your son?

My son is an extremely happy and energetic 5 year old. He has recently started school and loves playing sport. His favourite sports are cricket and Australian Rules Football. He has a younger brother who he loves getting into mischief with. He also has a rare Metabolic disease called Alkaptonuria. However, we have chosen not to tell him about his disease at this stage.

Do you remember what the first sign or symptom was? And can you talk a little about the diagnosis process?

The only symptoms he had were black urine and dark ear wax. We never really thought much about his dark urine because we only noticed it when he had accidents during toilet training and as he is our first child we didn’t know any better. When Nate was 3 he was hospitalised with post infectious glomerulonephritis. About 6 months later his kidneys had recovered but his test results were still not normal. With further investigations he was diagnosed with Alkaptonuria. Now the unusual urine stains make sense.

Can you tell us a little about your day-to-day experiences as a caregiver?

Due to the slow progression of Alkaptonuria, caring for Nate on a day to day basis really isn’t much different than for any other mum. The only things I do are to ensure that his ears don’t have any visible ear wax, as we’re very conscious of him being picked on. I also have to take him to a few extra medical appointments as he is under the care of the Metabolic team.

How has connecting to other caregivers, or others living with AKU, on PatientsLikeMe impacted you?

I was devastated when Nate was diagnosed with AKU and even more so when I found out how rare it was. I wanted to gather as much information as possible to help me understand and to help ease the way I felt. It wasn’t until I found the AKU Society in the UK and then PatientsLikeMe that it helped to alleviate some of those feelings. It’s been great to have a group of people who truly understand the disease and who you know will never judge you for any question you ask.

As a carer it’s my job to research as much as I can about AKU so when the time is right to tell Nate I can provide him with this information and he can connect with everyone on PatientsLikeMe himself. PatientsLikeMe has really had a positive impact on my life, at times it’s been comforting to know what potentially could happen to Nate and the quality of life he may have, but the benefits of having access to this site help outweigh some of these feelings.

If there was one thing you could tell everyone who is caring for someone living with AKU, what would that be?

Use all the resources out there like PatientsLikeMe and the AKU Society, which are amazing tools for reaching others who understand AKU better than anyone, fellow patients and carers, to research as much as you can about the disease. I believe that there is a potentially bright future for AKU patients if Nitisinone becomes available.

I also greatly believe if you’re a caregiver to a child with AKU, to let them be a child and let them have the childhood every child deserves and don’t weigh them down with their disease until you absolutely have to. Unfortunately the AKU will always be there.


Social media users say ‘yes’ to sharing health data

Posted January 23rd, 2014 by

There are some new survey results that just came out from the Institute of Medicine’s Evidence Communication Innovation Collaborative (ECIC) that show social media users give the stamp of approval to sharing health data. (A big, public shout out to the more than 2,000 PatientsLikeMe members who participated in the survey.) It’s very exciting to see the voices of so many in the community having such an impact.

Check out the results below and read more about it in the PatientsLikeMe newsroom.

 


Early – regularly – recommended: all for Cervical Health Awareness Month

Posted January 22nd, 2014 by

If you follow our blog, you’ve probably noticed that we post a bunch about awareness months, weeks and days. It’s part of our mission to bring a bit more attention to what’s going on out there and how you can get involved. This will be our first awareness post for 2014, and it’s for National Cervical Health Awareness Month.

Cervical cancer is the second most common cancer for women in the world. According to the National Cervical Cancer Coalition (NCCC), more than 12,000 women in the U.S. are diagnosed with cervical cancer each year, and more than 4,000 will die from complications.1 But there is a silver lining – it’s one of the most preventable types of cancer, especially if signs or symptoms are caught early on.

In fact, the cases of and deaths from cervical cancer have recently decreased significantly because of regular pap smears and health checks. From 2000 to 2009, the instance and mortality rate of cervical cancer in women decreased by 2 percent every year.2

If you’re a woman between the ages of 20 and 70, the NCCC recommends getting screened regularly and taking a human papillomavirus (HPV) test if your doctor suggests it. HPV is a group of viruses that has been linked with cervical cancer, and you can find out more information on high-risk strains at the National Cancer Institute.

January is coming to a close, so what can you still do to help raise awareness for cervical health before the month ends? Sharing the NCCC’s press release on cancer an HPV is a great way to start, and you can also check out their special posters and public service announcement. Don’t forget to use the #CervicalHealthMonth on social media, too.

If you’ve been diagnosed or know someone that has, visit PatientsLikeMe to find and connect with other women who are living with cervical cancer. We’re all in this together – through sharing our experiences, let’s raise awareness for cervical cancer and do everything possible to prevent and learn more about this common condition.


1 http://www.nccc-online.org/index.php/january

2 http://www.cdc.gov/cancer/cervical/statistics/trends.htm


Achieving wellness: An interview on mental health with Dr. Murali Doraiswamy

Posted January 14th, 2014 by

Murali Doraiswamy is a Professor of Psychiatry and Behavioral Sciences at Duke University where he is also a member of the Duke Institute for Brain Sciences. He also serves as an advisor to government agencies and businesses. Dr Doraiswamy is the brain health advisor for Men’s Health magazine and serves on the World Economic Forum’s Global Agenda Council for Neuroscience and Behavior.

What’s his take on PatientsLikeMe? What does he see as emerging mental health treatments? And what does he wish more people knew about mental illness? We recently had the chance to chat with him about all that and more. Check out what he had to say in our interview.

 

What interests you about studying and learning more about mental illness?

To me it’s one of the most important public health challenges for the 21st century – the mind affects every aspect of our body, our physical wellbeing and our family and social relationships.

According to the World Health Organization (WHO), a staggering 450 million people currently suffer from mental health conditions, making them one of the leading causes of poor health and loss of productivity worldwide (some 175 million years lost to disability). Mental illnesses, such as depression, also shorten one’s lifespan.

Rates of conditions, such as ADHD and PTSD are skyrocketing in the US and many newer conditions such as “Internet Gaming Disorder” are emerging. Many of these conditions have their roots in childhood or teenage years.

I am also interested in how culture, environment and brain interact in shaping our behavior. In particular, I am interested in how we may be able to apply insights from behavioral and neuroscience studies to tackle some of the major problems in society.

There is a huge upside to society if we can prioritize and implement low cost scalable public health strategies to treat and prevent these conditions.

As a doctor, what is something you wish more people knew about mental illnesses? 

Clearly drug therapy helps many people but it’s not a cure and may not work at all for many people. We need to do a better job integrating psychological and social interventions into our care models – to truly help people thrive and enjoy a full life.

The manifestation of mental health conditions is often dependent on the environment. For example, it would be a lot easier for someone to quit smoking if they lived today in New York city, which has banned all public smoking, than if they lived in New York fifty years ago when smoking was seen as trendy and acceptable even in hospitals. Emerging studies show that people living in densely packaged cities have higher arousal response to a given stimulus than people living in rural areas or those who have recently gone for a walk in nature. That’s why Central Park in New York may have a bigger effect on mental health than all of the hospitals in Manhattan.

Our diagnostic criteria are subjective and may not be accurate. The same person can often be given different diagnoses by different doctors and treated differently. Psychiatry is not immune to fads. For example, there has been a 40-fold rise in the rates of childhood bipolar disorder in the US over the past two decades – but is this real?

Mental illness can raise the risk for new medical problems, such as obesity and memory loss, and worsen the outcomes for pre-existing heart disease, diabetes, or cancer.

Any thoughts on what’s ahead in terms of new treatment advances?

Here are my top five.

      1. Protect the developing brain. The biggest mental health gains will come from simple public health preventive measures applied during pregnancy and childhood to protect the developing brains (such as childhood nutrition, supportive and secure family environment, reducing neglect, better education, reducing poverty, minimizing  exposure to war and conflict) as well as increasing access to basic physical and mental health care for the poor.
      2. Creating a Nurturing Environment.  A supportive social network makes us view stressors less as a threat. For example, a hug or the presence of a loved one not only reduces our perception of pain but it does so even at the nerve cell level! A lifelong study of 268 Harvard sophomores showed that the single most important predictor of physical and mental wellbeing fifty years later was not any of the things a doctor measures routinely such as cholesterol – it was close relationships. Likewise new studies are showing that spending time in nature (what I call as vitamin N) rejuvenates the brain’s memory centers and lowers our stress response – the reverse of what happens when you live in dense cities.
      3. Positive Psychology. We underestimate the effects that practicing positive activities (such as being grateful and optimistic, counting one’s blessings and performing acts of kindness) has on mood and well-being. But consider this – if a person gets 20 minutes of positive emotions from one act of kindness, he may get energized to go to the gym or to a poetry workshop where in turn he may make a good friend – a positive upwards cycle. For those seeking more information I recommend my favorite weekly blog Positive Prescription by Dr Samantha Boardman. I learn more from it than from all medical journals combined!
      4. Physical activity. A series of studies done at Duke has demonstrated that aerobic exercise is as effective as a prescription antidepressant for treating mild depression. Also in a review of over 100 studies of yoga, we found it to be promising for a range of mental symptoms including issues with sleep, anxiety, attention and mood. Exercise affects more than 20 chemicals in the brain in a positive way and may stimulate the release of endorphins and also nerve growth factors (which are like fertilizers for the brain). It may also protect your brain against age-related memory loss. It’s an old stand-by but new information coming out every day reinforces it’s effectiveness.
      5. Wellness enhancing technologies. Mobile apps, sensors, and online programs will increasingly fill in the gaps that a doctor may not be able to fill. Mood GymTM an online interactive web program – based on cognitive behavior therapy – helps people prevent depression and handle stressful situations such as relationship break-ups. It also teaches relaxation and meditation techniques. Positive Activity JackpotTM an augmented reality tool that locates pleasant and positive activities, using your GPS location. PTSD CoachTM, an app to help people learn and manage symptoms after a trauma. LiveHappyTM, a happiness boosting app based on the principles of positive psychology. MoodAgentTM, an app that seems to know what kind of music you are in the mood for – often better than you. And last but not least, sites such as PatientsLikeMe are going to play an increasing role in empowering those with illnesses.

I am not suggesting these recommendations are necessarily suitable for everyone and you may need to consult your doctor.

How do you think online communities like PatientsLikeMe can positively impact people living with a mental illness? 

PatientsLikeMe, while not being a substitute for medical care, brings the power of the internet to help such individuals better manage their own illness – education, greater insight into their own condition, online community, reduction of stigma, a sense of community – which can lead to positive benefits even when they are not online.

Often peer advice – tips from another patient – may feel more real than advice given by a doctor (since the other person has actually gone through the same condition).

As more people sign up for communities like PatientsLikeMe, this data will become a major tool for research and gaining early insights into which treatments work and which don’t.

Obviously these pros have to be balanced with the need for patient privacy and ensuring patients who reveal their stories don’t suffer any discrimination. But if used wisely PatientsLikeMe can be a powerful tool to achieve wellness.


A New Year with Jamie Heywood

Posted January 10th, 2014 by

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It’s 2014, and it’s a significant year for PatientsLikeMe and our members. Later this year we’ll mark the 10th anniversary of our founding. As we reflect on where we’ve come from and where we’re going, there’s one thing that has never changed—our commitment to make sure your real-world experiences are a central part of improving healthcare. 

Changing medicine for the better is a journey. This year, we want all of you to join us on that journey, every step of the way. That’s why we’re starting a new initiative to get even more patient-reported data. Co-founder Jamie Heywood talks about the idea of data donation, and all the good it can do.

 

 

Wow, ten years. That’s a long time. What do you think are some of the most significant accomplishments of the last decade?

It’s been an amazing journey. We started this site so people, including my brother Stephen, could find information that helps them live better day-to-day and contribute data to research. We wanted to shake medicine up, to make it more about the patient, to help people connect with each other and see what their options were and take control of their health. At the heart of that has been this underlying goal to make patient experiences matter. We thought we could create a site that would make people happy with features like forums or condition trackers, but also allow them to contribute to research every time they logged in. When we started out, that had never been done before. We took a giant leap forward in validating patient-reported health outcomes when we announced the results of the lithium study in 2011, which showed the efficacy of lithium carbonate on ALS. That was the first time patient-reported data collected via a website was used to evaluate a treatment in real-time and to refute the results of a formal clinical trial. Since then, everything’s changed. Now we’re hearing more companies in the industry talk about the patient voice and the importance of listening to it. Together with our members, we’re making them focus on what matters most—the patients.

You’re talking a lot lately about “donating your data for good.” What’s that all about?

We created a kind of public service announcement for our members and the general public to showcase the good your health data can do – for you, for others, and for research. The more patient data we can get into the hands of researchers, the more we’ll learn about how to improve treatments and care. Every time you tell us how you’re doing, or add information about a symptom or treatment to your profile, or participate in a survey, you’re telling researchers what they need to know about what it’s like to live with a disease. I’d love to see every member update the information in their profile every week. If you can do that, we can really make a difference. If you don’t, we wait – we wait for more and more people to take part in research studies, one study at a time, year over year. Some people with some conditions don’t have time to wait. Some people don’t want to wait. I think we can change that, but it takes a village. We’re all in this together, and the only way anyone will learn more and really make an impact on healthcare is if everyone pitches in.

What impact has member-reported data had on research to date?
A tremendous impact! Our research team has published more than 40 publications in scientific journals using the data and experiences that members share on the site. We started in ALS and took the patient voice to the forefront in that disease, highlighting under-recognized symptoms and, with the help of an inspirational ALS patient named Cathy Wolf, upgrading the ALS measurement scale. In MS, we’ve had strong partnerships with pharmaceutical manufacturers to help them develop better products and services that have been informed by patients. For conditions like fibromyalgia, mood disorders, and HIV, we have published findings on how the support of patients like you can have a therapeutic effect on improving outcomes. In epilepsy, we found that members who have made more friends on the site see better clinical outcomes, too. And we’ve helped change healthcare policy working with the Institute of Medicine (IOM) and many other government entities. All of this fantastic work was made possible by the active engagement of our patients, the data they make available on their profiles, and their willingness to share openly to benefit one another.

What is your ultimate vision of what patient-reported data can do?

I think of PatientsLikeMe as a dynamic learning system, one that can learn in real-time from the experience of every patient in the world. We want that system to be with you as you and your doctor talk about your treatment plan, to give you the most current data to help you understand where you are in your illness, to draw on other patients’ experiences so that you can create the best path forward based on your goals. That’s the impact patient-reported data can have on every patient’s life, and why we need to get as much of it as possible.


Putting patients first: An interview with partners CoPatient and PatientsLikeMe

Posted January 9th, 2014 by

Katie Vahle
Co-founder
CoPatient

Rebecca Palm
Co-Founder
CoPatient

Michael Evers
Executive Vice President of Marketing and Patient Advocacy
PatientsLikeMe

 

 

 

 

 

 

 

 

What’s this partnership all about?

Michael- Every day on PatientsLikeMe, our members are sharing their real-world experiences. They’re getting real support from people just like them, people who get what it’s like to have their condition and be on that journey. In the forums, they chat about everything from their diagnosis experiences to treatments they might be taking, but also share things to make each other smile, like funny pictures of cats doing crazy things.

The forum is also where members chat about their frustrations. And there are topics that come up time and time again like how expensive, and confusing, it is to deal with insurance, billing and overall medical costs. So when CoPatient approached us about working together, we thought it’s worth exploring a potential partnership. They consider themselves “medical billing advocates” and have put together a team that want to make sure everyone is getting the best, most knowledgeable assistance possible. If there’s a way to take the stress out of this healthcare journey for our patient and caregiver members, we want to be able to highlight it. CoPatient seems to offer services that can do just that. On the other hand, CoPatient wants to be able to tell their members about our PatientsLikeMe community because they see how our members are benefiting from tracking their health and connecting with others…all while contributing to research. It’s nice to be able to team up with other organizations that are as passionate as we are about supporting patients through their healthcare journey.

Can you tell us about CoPatient and why you started it?

Rebecca and Katie- We started CoPatient because we saw financial problems coming between patients and their health care providers. Patients are being buried under a mountain of paperwork and bills that they often don’t understand, while providers are spending even more money sending multiple statements in hopes of getting paid. The end product is often frustration for both parties and it can have real consequences, contributing to nearly 2/3 of personal bankruptcies. We felt very strongly that we needed to engage the patient in understanding the financial aspects of healthcare by providing expert resources to help them untangle the web. We don’t want to provide a quick fix; we want to build a community of educated, involved patients and caregivers that make wise healthcare choices with our help.

What does this mean for PatientsLikeMe members?

Michael- It means that if they have questions about their medical billing, expenses or insurance, they now have another resource to go to. Members are providing support and giving valuable advice to each other on PatientsLikeMe, but sometimes it helps to have another advocate in your corner. CoPatient can conduct free audits for PatientsLikeMe members to see if there’s been an error, which quite simply is very cool since medical billing these days can be riddled with pitfalls. In the spirit of transparency, we want to tell our members that the audit is free, but some of their services are not. Then the member can decide if they’d like to take another step forward with one of CoPatient’s paid services. We also want to let our members know that PatientsLikeMe doesn’t get any compensation if they choose to continue working with CoPatient.

Sounds like you’ve had some great success stories. Can you share a couple with us?

Rebecca and Katie- We provide a simplified, plain English explanation to people about everything they’ve been billed for a healthcare episode and any potential billing problems. Whether we find savings or not, people are often relieved just to have the peace of mind of understanding what they owe and having an expert set of eyes to review the bills. Of course, they’re really happy when we can find savings for them as well.

We recently saved over $30,000 for a cancer patient who is insured but had been erroneously billed. She had received hundreds of pieces of mail over the course of her first treatment and had stopped opening them. We took the whole box off of her hands and in the end she got a refund check. We were really proud to have saved her so much money, but equally happy to have alleviated her stress at a very difficult time in her life.

In another case, we worked with a Medicare member whose Medicare Advantage plan had gone bankrupt and stopped paying claims. Providers were billing her directly when they couldn’t get paid by the Medicare administrator, despite the fact that they aren’t allowed to do so. She wasn’t sure what to do, so we were able to get 100% of her bill written off and provided instructions to the providers on how to submit those claims to the appropriate party.

These were both very complex situations that many consumers might have difficulty addressing, but we were able to successfully resolve on their behalf. There are hundreds of other examples, and we’re very proud of the compassionate, passionate advocacy that we provide.


PatientsLikeMe in real life: reporting back from the PFF Summit

Posted January 6th, 2014 by

Dave, Rishi, and I spent a few days last month in sunny La Jolla, California – site of the biennial PFF Summit. Well, La Jolla is usually sunny… this year it was unseasonably cold and rainy! Nevertheless, not even the nasty weather could dampen the enthusiasm of more than 500 clinicians, researchers and (most importantly!) patients and caregivers who turned out from all over the world to meet up and share the latest research on pulmonary fibrosis.

The PFF Summit was hosted by the Pulmonary Fibrosis Foundation (PFF), who we met a few months after announcing the launch of the PatientsLikeMe IPF Community. We were very enthusiastic to help support the PFF’s work by sponsoring and contributing to the research exhibition at the summit. While I spoke with patients, caregivers and clinicians about our open patient registry and the history of PatientsLikeMe, Dave and Rishi learned about the latest advances in PF research and shared our study of the impact of PF on patients’ sleep. If you haven’t heard about it yet, here’s what we learned about PF patients and sleep:

  • A total of 66 IPF patients reported having or possibly having sleeping problems, and 47% of these had sleeping problems between 1 and 5 years.
  • Over half of our IPF members said that their sleeping problems were moderate, severe or very severe, and that their sleeping problems had affected their quality of life in the past 4 weeks.
  • IPF patients that have had sleep problems for a long time tended to report a lower quality of life.

Dave in front of the PatientsLikeMe poster with the findings from our study of PF and sleep.

There were many moments that both inspired and enriched our time at the Summit. Some highlights include:

  • Hearing patients say, “I’ve heard of you!” or “I just joined the community!” Welcome and thank you!
  • Watching patients engage with the science and ask thoughtful, tough questions of the medical experts in their field
  • Chatting with the caregiver of a newly diagnosed patient about how much support she had gained from connecting with other patients and caregivers through their local support group
  • The PFF’s announcement of plans to build a clinical registry and care center network with leading PF researchers and their institutions beginning in 2015

Rishi at the PatientsLikeMe booth.

We had a lot of fun and learned even more, but we came home knowing there is still much to be done back here in Cambridge on behalf of all patients. We continue to be proud contributors to patient-centered research that advances medicine. On a personal note, I am profoundly grateful to all our members, for your continued openness and the courage with which you continue to share your story. It is always a pleasure to meet you in real life. You’re the reason every person on the PatientsLikeMe team comes to work every morning, and why we continue to believe that it’s you – the patient – that will change healthcare for the better.

PatientsLikeMe member ArianneGraham


“We can and will do better” – An interview on pulmonary fibrosis with Dr. Jeff Swigris

Posted January 3rd, 2014 by

Just this past month, a few members of the PatientsLikeMe Team (Arianne, Dave and Rishi) traveled to La Jolla, CA for the Pulmonary Fibrosis Foundation Summit. It was quite the mixed crowd (with patients, clinicians and researchers), and it gave them (and everyone at PatientsLikeMe) a chance to learn more about pulmonary fibrosis (PF) from different points of view. Thank you to everyone who stopped by our exhibit booth and for sharing your experiences.

While they were there, the team had the chance to interview Dr. Jeff Swigris. He’s an Associate Professor of Medicine at National Jewish Health in Denver and has been working with PF patients for almost two decades. He’s published over 65 articles on interstitial lung disease (ILD), most on IPF, and he has a special interest in Patient Reported Outcomes (PROs) and patients’ Quality of Life (QOL). Dr. Swigris is also the Director of the Participation Program for Pulmonary Fibrosis (P3F), an online resource for patients, caregivers or anyone interested in learning more about PF. On the P3F website, patients and caregivers can also find out about studies they can currently enroll in. Right now, the P3F is currently enrolling for a study that aims to examine the effects of supplemental oxygen on patients with PF and their caregivers.

Why do PROs matter? And what questions are Dr. Swigris and his team at the P3F trying to answer? Find that and more in our interview.

Can you tell us a little about yourself and what led you to focus your research on pulmonary fibrosis?

Originally from Illinois, I went to med school and completed much of my education in Ohio before pursuing subspecialty training in Pulmonary and Critical Care Medicine in California. What led me to focus on PF? Like many pulmonologists, at the start, my interest was in the critical care medicine aspect of the profession, because it’s so immediate: there’s an urgent medical need that requires an instant intervention, and you can see the results of your decisions right away. That pace/action drew me to the field, but as a resident, in the late 1990s, I did a pulmonary pathology rotation. This was around the time we were uncovering new and exciting things about interstitial lung disease (ILD) in general and PF in particular. The community discovered that, upon careful re-inspection, certain ILD patients that had been labeled with idiopathic pulmonary fibrosis (IPF) lived longer than expected, and their longer survival was driven largely by what was seen under the microscope—in lung biopsy specimens from these patients. When I landed at Stanford, I didn’t want to focus on pathology, I wanted to focus on ILD patients. There wasn’t a structured ILD program at Stanford when I first arrived, but IPF researcher and one of my mentors, Glenn Rosen, offered me the chance to help him start one. I realized no one in the ILD community was focused on ILD patient experiences and their quality of life (QOL). I wanted to focus on ILD patients as people and really understand their experiences (probably influenced by my training in osteopathic medicine, which offered me the perspective of looking at patients through a holistic lens). It was a gap that needed to be filled. I had found my niche. That’s how I got started focusing on the patient experience, patient reported outcomes (PROs) and QOL in PF.

For those who might not know about it yet, what’s the P3F all about?

The goal of the P3F is to create a safe, trustworthy online environment and informational resource for patients and caregivers and to provide a platform for conducting research that matters to patients with PF. In the current project, we’re trying to determine whether and how supplemental oxygen affects (benefits) patients with PF. We’re funded by PCORI, which is an amazing research organization. As mandated by PCORI, we’re getting everyone involved in this research: patients, caregivers, even oxygen prescribers. Above all, this project gives me a chance to work with very engaged patients, some of who are actually members of my research team.

Knowing what questions to ask patients, the when, how and why of the thing is really important. The first thing we needed to do for this project was to figure out what question needed to be asked—what question do patients with PF want to know about? We started the investigation by going to the experts—the patient- and their caregiver-members of our PF support group. I noticed all my PF patients ask about oxygen, and oxygen is a major topic at our support group meetings. My perception is that oxygen is generally perceived as a “bad” thing because it’s a marker/milestone that the disease is severe and progressing. When supplemental oxygen comes into the home, it affects the entire home environment and everyone there, particularly the patient, but also the caregiver. There’s a lot of equipment and planning involved, as patients know, and using oxygen becomes “a daily grind.” Supplemental oxygen can be a constant reminder the disease is getting worse, but the reality is we know very little about the therapeutic effects of oxygen for PF patients (and the majority of the available data has been mostly borrowed from COPD studies). Some questions we want to know about oxygen use are:

  • Do patients who use it feel better?
  • Does using oxygen allow people to be more active? Does this change the longer patients use oxygen?
  • Are people who use supplemental oxygen more or less likely to leave the home? Does this change the longer patients use oxygen?
  • Do patients who use it live longer?
  • Does oxygen use prevent pulmonary hypertension?
  • What are the downsides to using oxygen (eg, public stigma)?

I want to include patients in the process of filling this big gap in knowledge (about supplemental oxygen), and I needed patients to help us shape the goals of the study. (Sounds pretty in line with PatientsLikeMe!)

On PatientsLikeMe, the pulmonary fibrosis community has their own patient reported outcome measure (PRO) we call the PF Severity Score. Can you tell us a little about your own interests in PROs and how you see them being used in healthcare?

I believe the patients’ perspectives are incredibly important, and they will be increasingly used as endpoints in therapeutic trials. Improving lung function is one thing, but is that all we can do? NO! We want to allow patients to feel better and do more. Improved patient QOL should be a major goal, maybe the most important goal. The challenge is the rigorous development of PROs, so the clinical and research community can be confident the PRO is sound.

How do you think online communities like PatientsLikeMe can impact someone living with a rare lung condition?

For some patients, particularly those with rare diseases, it may be difficult or impossible to find other patients with the same illness. Even for common diseases, there is such comfort in knowing you’re not alone (online or in person, someone knows what you’re going through). Knowing you’re not alone gives you confidence, a sense of control, to persevere and keep living.

As an expert in the field, what’s ahead for pulmonary fibrosis research and quality of life advancements? (Any studies you’d want people to know about?)

As mentioned above, one of the big gaps in understanding of ILD is the benefits and drawbacks of supplemental oxygen. That’s what the current study on the P3F is focused on. People can find out more information on that here. We need disease-specific PROs that have been rigorously developed in the targeted patients. Continuing to borrow data from other diseases won’t work for the PF community in the long term. I’m definitely interested in learning more about how I might partner with PatientsLikeMe and use the Open Research Exchange to develop these PROs. If we all find a way to work together, we can and will do better for patients.