Key Points:

  • A new project, the R1 ALS Clinic Survey, is using patient experiences to make data about ALS clinics throughout the United States widely available. 
  • The survey was created by a team of people impacted by ALS, including Pat Dolan and Sandy Morris. 
  • The survey asks patients to share their experiences of their clinic's services, staff, and quality of care. 
  • The survey data will be made easily accessible to all through an online dashboard that includes an interactive map in order to aid patients in their decision making.
  • The team behind the survey also believes the data they are gathering could help clinics learn about the gaps in their care and better serve their patients.
  • If you or a family member are living with ALS, you can help the R1 team achieve its goals by taking the R1 ALS Clinic Survey here.

For many people facing an Amyotrophic Lateral Sclerosis (ALS) diagnosis, finding an ALS clinic to provide care is one of the most significant decisions they will make. Often, these decisions are shaped by factors like geography, convenience, and even health insurance networks. Information about different ALS clinics can be difficult to find – a patchwork of word of mouth and limited online resources.

However, a new project, the R1 ALS Clinic Survey, is working to change that by making data about ALS Clinics throughout the United States widely available. To accomplish this, the team behind the project is turning to the most reliable source possible – the experiences of patients who have received care at these clinics.

“The challenge is that we don’t have a complete ALS clinic database,” says Pat Dolan, one of the project’s leaders and driving forces. “My mission is to map every location where our community goes for care. We need to understand where we can receive care and the quality of that care. My hope is that our work will help the community to find the best care to maximize their quality of life.”

Pat Dolan, Sandy Morris, and the Origins of the R1 Team

The story of the R1 Survey begins with two people with ALS who had dedicated their lives to helping others with the disease – Pat Dolan and the late Sandy Morris. Sandy’s name should be familiar to many people throughout the ALS community. From the time of her diagnosis until her death in 2022, she became one of the country’s most prominent advocates for people with the disease and a driving force behind initiatives including I Am ALS, the Morris ALS/MND Principles, and the passage of the ACT for ALS.

Before Pat’s diagnosis in 2016, he worked as a mapmaking specialist, using geographic information systems (GIS) software to create interactive maps for use in the utility industry. After learning he had ALS, he became determined to use his skills to help others facing the many challenges of his disease. He created the ALS Geospatial Hub – a nonprofit featuring dozens of maps created by Pat, who does all this work using eye-gaze technology. On the Geospatial Hub site, people with ALS, their caregivers, and families can find maps on topics such as Clinical Trial site locations, congressional district information for advocating for ALS-related political issues, and even a guide on where to find Ales for ALS™ beer.

“The ALS Clinic Experience Survey is a project I have been working on since my diagnosis,” he says. “After I was diagnosed, we wanted to know if there were quality ALS Clinics near my family. When we did our search, we had to call the local ALSA chapters to find out if there were ALS Clinics near where our family lived. But it was impossible to know what other patients thought of the clinics that we were considering moving to.”

Pat says this project remained primarily an idea for several years – until he reached out to Sandy for help.

“It wasn’t until I emailed Sandy Morris late one night, asking for help on making this project real,” he says. “I owe her and R1 Team’s experiences and wisdom for bringing this project to life. I truly believe this project will have a positive effect by communicating our care expectations and educating the ALS medical community on those expectations.”

Unfortunately, as the ALS Clinic Survey project began to coalesce, Sandy Morris knew she didn’t have much time left. With this in mind, she helped to bring together the R1 team to help keep her mission alive. The survey would be their first major project. Pat brought his GIS skills to the table, while others including Sandy’s daughter Kylan, Pat’s wife Mara, ALS advocate Jack Silva, and several other community members worked together to help create and promote the survey.

“This group got together two-ish weeks before [my mom] ended up exercising her death with dignity,” remembers Kylan. “And so, the few days before we knew that she was going to be leaving us, she was priming me to take over, leading the call, and continuing seeing the ALS Clinic survey through. But the initial beginnings were Pat and Mom collaborating, with his awesome maps and her ability to lead a team and make a project come to fruition.”

Jack, whose role in the project has been to help promote the survey to ALS organizations, clinics, and individuals, says getting the call to join the team was a great honor.

“When Pat Dolan and Sandy Morris, two juggernauts in this space who are filled with compassion, contrarianism, and intelligence, reach out to you, I'm in before they even tell me what it is,” he says. “So now what you get is R1, which is 20 more people with the same DNA, the same indomitable spirit. I looked at it as if Steve Jobs wanted to hire me.”

The ALS Clinic Survey

After months of work by the R1 team – collaborating with ALS organizations to develop a questionnaire and building an interface to make the data easily accessible – the survey came online in late 2022. For the data-gathering portion of the project, they created a roughly 8-minute questionnaire designed to be taken either by someone with ALS or a caregiver.

People taking the survey are asked to share their opinions and experiences about their clinic's services, staff, and quality of care. They asked questions such as:

  • How long do they need to travel to reach their clinic?
  • How long do their appointments usually last?
  • Whether they believe their neurologist is knowledgeable about current ALS clinical trials?
  • Are the clinic staff empathetic to the needs of people with ALS?
  • Whether the physical therapy provided is helpful?
  • Do the appointments generally start on time?
  • Does the clinic have adaptative equipment available to borrow?
  • Do they offer genetic testing?

The answers to these questions, as well as any additional comments provided by respondents, can then be viewed on a dashboard created by Pat. This map represents the core of the Clinic Survey’s utility for people with ALS and their caregivers, especially those who are newly diagnosed or want to change clinics. They are not only able to see the clinics that are close to them, but can also view the ratings and comments of other patients to help make a more informed decision.

“The hope of this project is to be the ultimate clinic solution in the United States,” says Kylan, “by allowing you to locate your clinic, identifying the gaps in areas without enough clinics, and then, most importantly, allowing people living with ALS and their caregivers to be able to share real experiences of what they've undergone. So, think Yelp review/Google Review/Glassdoor. The idea is to allow us to elevate our care, because, as we say in the Morris ALS Principles, ‘nothing about us without us’ in this disease.”

Highlighting the Best Clinics, and Helping Others Do Better

In addition to helping people with ALS and their caregivers make more informed choices, the R1 team believes that the data they are gathering has the potential to help improve the quality of care at ALS clinics around the country. By gathering a wealth of data on patient experiences, the survey has the potential to highlight the clinics doing the best job of serving the ALS community. However, perhaps most importantly, the data can also help those that aren’t meeting their patients' needs to learn how they can improve.

“I think ultimately what we've learned so far is that the standard of care is not the same everywhere,” says Jack. “For some clinics, it's great. For other clinics, it falls under the standard of what it needs to be. There is potential room for improvement, because it seems like these clinics, while not living up to the standard, are not necessarily apathetic. They're just not educated, they’re not in tune with what patients need and want.”

For both Kylan and Mara, this goal resonates deeply with their experiences navigating ALS clinics with their mother and husband, respectively. They both emphasize that most clinics could be more proactive in working to improve the quality of life of their patients.

“[A survey respondent] said something that really spoke to Pat and me,” says Mara. “The health care professionals are all knowledgeable and nice people, I just don't think they recognize that people living with ALS want to improve something about living with this disease, not just hear about what is next due to the disease.”

“Clinic became very depressing and sad for us,” adds Kylan. “It felt like a death march, like we were just charting the demise. [With the Clinic Survey], we're going to get ahead of that and bring the clinics all of the questions and facts that they should be giving to the people living with the disease who walk in and ask ‘what is our next step?’ We want them to say things like – ‘this can add years to your life if you use a nose bipap. This can help you to feel like a part of the world, to be heard and seen and feel safe.’”

They also say that, both in their own experience and in survey answers they’ve seen thus far, many clinics could improve on their knowledge of available ALS treatments, clinical trials, and supplements.

“[Among respondents so far], only 33.84% believe that their clinic helps provide resources to access promising, non-approved FDA treatment options,” says Mara.  “This stat is important because we're talking about a disease state where the only hope, after 150 years, lies in 57 ALS reversals, EAP programs, off-label drugs, and therapies that aren’t approved yet.”

The Next Steps for the ALS Clinic Survey

Currently, the R1 ALS Clinic Survey is still in the initial data collection phase. As of March 31, 2023, they have collected 248 surveys about 114 clinics. The team is currently working to continue adding new clinics to the map and spreading the word about the survey to gather more responses. They’ve set a goal of gathering 350 responses in the coming months. After reaching this number, the next step will be working to approach the clinics themselves, sharing the survey data to help them learn about what they are doing right, and what they could be doing better.

The overall mission is for the ALS Clinic Survey dashboard to be an invaluable tool for people with ALS to find the best clinic for their needs, and for clinics to learn how to best serve their patients. For much of the R1 team, and especially Kylan, the project has taken on a deeply personal meaning. She says that, beyond just a way to help support the ALS community, it’s been instrumental in processing the immeasurable loss of her mother.

“This project saved me,” she says. “And it's so healing for me. I think it kept my brain moving forward in the right direction, whereas I wanted to just crawl on the ground on most days. But this team saved me in so many ways. I'm so happy to have them. It feels like my mom is with me in all that we do here.”

If you or a family member are living with ALS, you can help the R1 team achieve its goals by taking the R1 ALS Clinic Survey here.


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