New Film Educates Spine Patients
Orthopedists are well aware of the various causes of and treatments for spinal problems, but what about their patients? When severe back pain hits, it can often mean the start of a long and confusing path toward recovery. Some patients find their active lifestyles reduced to a constant focus on pain management, and in the midst of this life-changing struggle, finding the right doctor and the right treatment can be a daunting task.
Fortunately, these are just the sort of people who stepped up to help educate other patients in Richard Longland’s new film, Getting Back on Their Feet. The film is the first of its kind in the world of spinal arthroplasty, and who better to put this project together than someone who intimately knows the struggles of living through spine surgery.
“I was inspired to make this film because I was a patient myself, ” explains Longland. “Even though the Internet provides a wealth of information at our fingertips, I had to do a lot of research. When I say research, as a layman, I mean I had to spend hours and hours online, and I complemented that by reaching out to patients through discussion boards, by e-mail and eventually by phone. And it struck me then, and unfortunately now, that patients must look in so many places to put the pieces of the puzzle together. So there's a tremendous amount of information in the film as it attempts to organize all the information that patients need and put it in a logical presentation that is easy to watch.”
Through candid interviews, Getting Back on Their Feet follows seven spine patients from their initial realization of their spine problems through diagnosis, surgery, recovery, and all the important research and decisions that happen in between. When spine problems caught up to Ken, a police officer and active athlete, it felt like “taking a race car and putting it up on blocks.” He tells the camera, “I was miserable being me, ” while he describes how pain management became his daily routine. Jim, another patient in the film, says, “My kids joke about it now, but I was always on the floor…and that’s where they remember me being for a large portion of my life.” Eileen also points out the difficulty of helping friends and co-workers understand the problem: “people don’t necessarily understand pain unless they see blood and guts.”
Starting with these difficult realizations and life changes, the patients recall their paths to recovery in an effort to educate future patients about spine surgery. Most of the people in the film decided to undergo artificial disc replacement (ADR), a procedure approved by the FDA in October 2004 for the lumbar region of the spine. Although most of the interviewees preferred ADR over spinal fusion procedures, the film is careful to point out the risks and potential complications of ADR, and one patient urges viewers to exhaust all pain management options before considering surgery. Thus, the end result is an objective, 75-minute, high definition film which feels like the visual equivalent of a “how to” manual for recovering from spine problems. A DVD copy of the film can be obtained through a suggested donation to Richard’s Arthroplasty Patient Foundation of $50 for ADRSupport patients, and slightly more for doctors and organizations.
Longland describes his intended audience for the film in terms of a target: “at the very center, it would be spine patients who are considering spinal surgery of some kind. The next circle from the bull’s-eye would be loved ones, family members and friends. And the last circle would be people in the spine industry, whether it's medical professionals or people who read orthopedic publications.”
The Making of the Film
But how did one ADR surgery patient with no background in film put together this comprehensive documentary? “Everything started with surgery on June 24th, 2004, over five years ago, ” says Longland, when he underwent a single-level (L5-S1) ADR surgery. “When I was recovering, I felt great, and I decided to use that energy to launch a website: ADRSupport. But it wasn't until 2006 that I realized my obligation and clear path to do more to help spine patients. I looked at how patients were struggling to get reliable information to support their decision making while battling insurance, getting a diagnosis, managing pain, and researching new spine treatments like disc replacement. I decided the best thing to do was to start a nonprofit organization. That way, I knew I could offer the transparency of providing all the financial reports online, while aspiring to lead a credible, helpful, and patient-centered organization.”
Longland applied for nonprofit status in 2006 and received his 501(c)(3) approval in 2007 for The Arthroplasty Patient Foundation. Today, the foundation’s “seed organization, ” ADRSupport, has grown into an online community that brings together people of all walks of life from over 70 countries. And it’s not solely for ordinary patients; doctors, radiologists, dentists and researchers have all contributed as members in the community.
However, in addition to this online support forum, Longland sensed that film would be a great medium for delivering information to spine patients and decided to make the documentary at the same time he applied for nonprofit status. “Patient selection was a big part of this, ” explains Richard. “Initially when I announced my intention to do this film, way back in 2006, I got some enthusiastic responses from the member community at ADRSupport, and I narrowed down the candidates to 12 people.”
Unfortunately, that entire list of 12 patients didn’t make it into the final version of the film. “I wanted to include patients that did not have good outcomes as well, and it was awkward for me to think about interviewing people who were still suffering greatly, ” says Richard. “But they wanted to help the cause and contribute to the overall educational aspects of the film. One patient had to cancel. I think his pain was just too severe.” Other cancellations followed for fear that insurance companies would ask for patients’ money back if insurance executives saw the film. Despite these setbacks, Richard still found a group of interviewees who were able see the project through to the end.
He also had the help of one amazing partner. “There is no way that I could have accomplished this feat without Moki Goyal, ” says Longland. “I actually worked with him many years ago at an Internet firm when he was a web developer and programmer. Then Moki moved to New York and worked at a video production company while attending graduate school in video production. In 2004, he helped me launch ADRSupport and its online community, now a global family of thoughtful and supportive spine patients. I found Moki easy to work with and extraordinarily talented. So when I told him about the film opportunity, he was happy to help the cause while furthering his technical skills in HD production.”
Richard then took a kind of crash course in video production through making the film. He learned technical aspects of video production, including camera and audio setup and proper framing of his subjects. “I really wanted to shoot in high-definition for maximum picture quality. What I realized is that in HD, things such as focus and lighting are much more critical than in standard definition production.”
Candid Stories and Useful Advice
Besides the technical challenges inherent in filmmaking, Richard also learned about how the medium of film can change the expected content. “I actually used the same script for each patient interview, ” he explains. “But as you can see from the film, there are a lot of different kinds of thoughtful responses. When you're face to face you'll hear more details that you won't learn about anywhere else. There's a level of intimacy there that enables that kind of honest candor that is raw, unexpected but usually of interest and utility to other spine patients.”
For example, another interviewee named Jim gives his own scale for measuring progress during post-op recovery. It isn’t the normal bit of advice you might hear in a book or from a doctor, but it’s a useful way for patients to imagine and work through the healing process. “When you're in the bathroom, ” says Jim, “there are so many things that happen that you need to do with your body, such as washing your hands, shaving your face, getting in and out of the shower, putting on your pants without a grabber or without somebody helping you, putting on your socks. These are the things to watch to determine what your rate of progress is. Forget about the numbers and forget about everything that everybody talks about. What you can do in the bathroom tells you how much better you're getting.”
In order to get this sort of candid advice for patients, Richard had to continually improve his interviewing skills. “You have to ask the right question, ” he says, “and sometimes ask the same question in several different ways in order to glean information that maybe the patient hasn't even thought about. One of those things I focused on was how much responsibility the patient placed on themselves to research and get information as compared to a more traditional patient role of relying completely on the doctor for everything. That's a really interesting ‘thread’ that I looked for in the interviews, and you'll see subtle differences in how empowered patients allow themselves to be.”
Projects on the Horizon
Longland believes that his film and his nonprofit organization can encourage patients to empower themselves with research and decision-making. “Many spine patients are literally at the end of their rope, and they're thinking ‘just fix me, just fix me.’ They're thinking very mechanically, and that's not always good, because they might not do the due diligence on their potential contra-indications. This is potentially a tricky issue. For example, if the patient presents with a long list of health complaints and defers solely to an orthopedic surgeon, the “surgeon-patient” team may not have the expertise to address all the cause(s) of chronic pain afflicting the patient. This is not a finger-pointing exercise; it is simply recognizing the terrible complexities now facing the modern spine patient.”
Richard’s commitment to educating patients like himself is one of the main reasons why he wants to continue making films. “Any issues in spine are inherently complex, ” he says. “Film is a great format to crunch down, distill and convey information into one place in a fairly balanced manner that will help other patients. Many spine patients do much better after surgery, compared to their pre-op pain levels, but there's still a tremendous amount of research and support that is needed to help these spine patients even after surgery. This is the challenge that fueled the formation of our foundation mission statement. We try to help people get back on their feet by providing surgical information and naturopathic information. We keep a close eye on some of the biological discoveries as well. It takes more than one tool in the tool bag, as patients and doctors know.”
Among the interviewees in Getting Back on Their Feet, “one common thread is insurance and the cost of these surgeries being a nightmare for almost everybody, ” says Richard. “And it hasn't improved much, unfortunately. The thing I really wanted to delve into was the contra-indications for surgery because several patients interviewed (though it's not discussed explicitly) had arthritis and autoimmune conditions not comfortably dealt with between doctors and patients. I'd like to do another whole video on that topic.”
Richard Longland plans to continue bringing patients together and helping them to share their stories. As for the patients in Getting Back on Their Feet, the film does have a happy ending. Jim’s wife tells the camera, “he’s wiser, he has survived a nightmare, and now he can help others. Our sons are seeing a whole new guy…kids are very forgiving, and they can forget that this person who just laid on the floor is now this interesting, thriving human being who has a new lease on life.” And as for Jim, he’s not looking back.