When a Clinician Becomes a Patient
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- About PCORI
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Provide Input
- Draft Key Questions: Systematic Review of the Impact of Doula Support During Pregnancy, Childbirth and Beyond (2024)
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Past Opportunities to Provide Input
- Patient-Centered Economic Outcomes Landscape (2023-2024)
- Systematic Review of Audio Care for the Management of Mental Health and Chronic Conditions (2023) -- Draft Key Questions
- Proposed New Methodology Standards for Usual Care as a Comparator (2023)
- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care (2023)
- PCORI's Proposed Research Agenda (2021-2022)
- Proposed National Priorities for Health (2021)
- Proposed Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research (2020)
- Proposed New PCORI Methodology Standards (2018)
- Data Access and Data Sharing Policy: Public Comment (2017)
- Proposed New PCORI Methodology Standards (2017)
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Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
- Leadership
I was 25 when I was diagnosed with multiple sclerosis (MS), five years ago. I was young, an athlete, and an intensive care unit nurse. I had recently begun a competitive graduate program to become a nurse anesthetist. I had been having numbness and other symptoms on and off for quite some time, but I told myself it was just stress and tried not to worry about it too much. Eventually, my strange symptoms became much worse.
One day while I was working out, my right foot fell asleep, and it never woke back up. Over the next couple of weeks, the numbness started creeping up until both of my legs were completely numb. Between work, school, and athletics, my schedule was packed, so I again tried to ignore it. I told myself it was probably just a sports injury.
After studying hard for nearly a year, I was finally starting clinical rotations, where I would learn how to administer anesthesia in the operating room. I was a bundle of nerves that first day, and I barely slept the night before. As I changed into my scrubs, I realized that all sensation from the waist down and in my right arm was gone. Still, I told myself that I was just under a lot of stress and I decided to push through it. In the operating room, I tried to draw medication into a syringe, but my hand was too weak. I looked up at the bright florescent lights and realized they were just a blur. Suddenly, it was clear that my strange symptoms were not just stress or a sports injury, and I finally began to panic a little.
I had walked into the hospital that morning as a healthcare provider, but I didn’t walk back out for over a week. When I did, I left as a patient.
Now, as both a patient and a neurology nurse practitioner caring for others with MS, I want to help find better treatments without all the side effects we now have to put up with. I’ve participated in clinical trials as a patient, and I'm on the membership committee for iConquerMS, the Multiple Sclerosis Patient-Powered Research Network. It's one of the 33 networks of PCORnet, the National Patient-Centered Clinical Research Network. (See Multiple Sclerosis Research Network Builds on Patient Input.)
PCORI's Multiple Sclerosis Focus
<p>PCORI has funded eight patient-centered comparative clinical effectiveness research studies and methods projects about multiple sclerosis. This funding includes nearly $20 million for four new studies on therapies for MS.</p>
<p>Two of those studies will compare the pros and cons of drugs to reduce MS attacks or slow the disease’s progression. A third will evaluate medications used to treat fatigue, a common problem for people with MS. The fourth will assess whether patients with MS in rural and low-income areas benefit as much from rehabilitation therapies provided via telehealth as they do from treatment in a clinic.</p>
<p>Previously awarded projects include a pilot study that developed and tested a digital tool that can display health information for use by patients with MS and clinicians. (Read more about this project in <a href="/research-in-action/tablet-tool-harnesses-data-many-patients-individual-choices">Tablet Tool Harnesses Data from Many Patients for Individual Choices</a>.)</p>
<p>For more information, see a <a href="/research-results?f%5B0%5D=field_project_type%3A298&f%5B1%5D=field_award_tags%3A1041">list</a> of projects related to MS.</p>
Using MS Experiences to Help Others
People with MS have extremely variable symptoms and disease courses. (See A Multifaceted Disease Requires a Patient-Centered Response.) I have the relapsing-remitting form of the disease, which means I go through periods when I have new or worsening symptoms. These relapses have caused a lot of damage to my spinal cord, and even when I’m in remission, I deal with aftereffects. I have nerve pain and sensory loss in my legs when I walk even short distances.
Having MS has changed my life in many ways. It has been a challenge. But it has also given my life and career more purpose. After being diagnosed, my first neurologist said that my prognosis was poor and that I should pick a less demanding career. But I finished school—and got a new neurologist.
I’ve been lucky to be able to keep working, even during relapses. I’ve used wheelchairs and canes to get around. I’ve given myself intravenous steroids at my desk during lunch.
In 2013, my new neurologist asked me to come work with her as an MS nurse. I was afraid that it would be discouraging because I’d be caring for a lot of people with advanced disease. But I loved it. Not long after I started, I got a phone call from the mother of one of my patients, who was a teenager and had stopped taking medication. The mother felt powerless as her child’s symptoms got worse.
I hadn’t told any of my patients that I had MS, but I decided to tell the teen. We talked on the phone for around three hours, not just about MS but about life and moms and everyday stuff. I was the first young person with MS that this patient had met. It made a huge difference.
That was a lightbulb moment: I could use my experience to have an impact on the MS community.
Joining iConquerMS has been incredibly empowering. It gives people with MS some of the power and control that MS takes from us.
Joining and Furthering Research Efforts
There are a dozen disease-modifying medications that can control MS relapses and that slow disease progression. I have tried five different medications, but I’ve had a really hard time finding one that will stop my relapses. I need more answers than I have now, and so many of us are in the same boat. iConquerMS is collecting very large amounts of information about its members, not only their data but also their experiences and ideas.
We are working to enroll people with MS into the initiative, build trust within the MS community, and take advantage of PCORnet’s unique way of doing research. By looking at so much information, we might find trends we didn’t know existed. That could lead us to understanding what causes MS and finding ways to manage symptoms that are more practical for patients.
As both a clinician and someone living with MS, I hope that a cure will be discovered in the near future. However, I believe that if we want to find a cure for MS, we first have to understand what causes it. The iConquerMS initiative wants to help us learn more about how and why MS develops, and, importantly, what we can do to help people who have MS right now.
Joining iConquerMS has been incredibly empowering. It gives people with MS some of the power and control that MS takes from us. Being a member of iConquerMS gives me hope because I know that I am helping create a brighter future for myself and my patients.
iConquerMS has about 3,100 people with MS enrolled now. I would like to see everybody with MS take the initiative to have a part in research, even if we’re not experts in medicine or science. Patients don’t realize how much insight we have. Living with this disease makes us the experts. I am looking forward to sharing my experience and expertise at the PCORI Annual Meeting.
[[{"fid":"8011","view_mode":"default","fields":{"format":"default","field_file_image_alt_text[und][0][value]":"PCORI Annual Meeting November 17-19 #PCORI2016","field_file_image_title_text[und][0][value]":false},"type":"media","link_text":null,"field_deltas":{"1":{"format":"default","field_file_image_alt_text[und][0][value]":"PCORI Annual Meeting November 17-19 #PCORI2016","field_file_image_title_text[und][0][value]":false}},"attributes":{"alt":"PCORI Annual Meeting November 17-19 #PCORI2016","height":116,"width":230,"style":"float:right","class":"media-element file-default","data-delta":"1"}}]] Looking ahead to PCORI’s second Annual Meeting, November 17–19, we asked several of the scheduled presenters to describe their journey into patient-centered outcomes research and discuss what the meeting’s theme, “Changing the Conversation about Health Research,” means to them. Join the conversation by using #PCORI2016 on Twitter.
The views expressed here are those of the author and not necessarily those of PCORI.
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Comments
February 2, 2017, 10:06 PM
Comment by Nancy Cornish Molter,
Love this woman and her story.
I am 53 and was DXd with MS @31.
I was pretty fine for years! The last 2-3 years my back and legs r worse. Can't walk too far, balance and fatigue r a struggle. I want to get moving and do something useful! An advocate for others? Fundraiser? I would like to hear about opportunities