4 posts tagged “neurological condition”

Getting to know our 2014 Team of Advisors – Lisa

Posted October 27th, 2014 by

A few weeks ago, we kicked off the “Getting to know our 2014 Team of Advisors” blog series with Dana, a PatientsLikeMe member from New Jersey that is living with bipolar II. And now, we’d like to introduce you to another member of the team – Lisa. 

About Lisa (aka lcs)

Lisa’s recent work experience was to help healthcare providers improve care delivery working for Cerner Homecare, a home health/hospice software solution, and Press Ganey, a patient satisfaction measurement/improvement organization. She is very knowledgeable about providers/systems and the flaws in the system. She was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime somnolence, and she is now a volunteer at National Patient Advocate Foundation, and a Mom whose daughter just got married in June.

 

Lisa on being part of the Team of Advisors

“When we had our first in-person meeting in Cambridge, we were a group of strangers who had no idea what to expect. We quickly learned we were connected by our common experiences and our passion to improve the patient’s experience. I think we were all surprised that our variety of health conditions gave us much more in common than we anticipated. Our passion and respective experiences made the discussion rich. And the PatientsLikeMe Team made us feel special and like we were part of the team. I think dinner the night of our arrival, before we’d had any formal introductions to each other, lasted over 3 hours and ended only because of fatigue!

Before I was introduced to the history and mission of PatientsLikeMe at a deeper level, I was an advocate and I knew I was benefitting from the community and tools. Learning more about the history of the brothers, the openness of the culture and the passion shared by the formal team has made me an evangelist.”

Lisa’s view on patient centeredness

“Patient centeredness is a new buzz-word in healthcare today. It’s somewhat oversimplified, but at its most basic it is putting the patient at the center of care. This means many things in healthcare: ensuring access to care, engagement of the patient at and between visits in their own care, integrated care across specialties. In research: collaboration among researchers to advance discoveries as the priority, with financial return secondary; finding a better balance between patient safety and speed to market of new discoveries, improving patient participation in clinical trials.”

Lisa’s contribution to researchers at the University of Maryland 

PatientsLikeMe recently invited the University of Maryland (UMD) to our Cambridge office for a three day consortium that kicked off a partnership funded by their PATIENTS program, which aims to collect patient input and feedback on all phases of research, from ideas to published results. For one of the working sessions we invited Lisa to join us remotely, to discuss her journey with Parkinson’s disease (PD), and share her perspective and expertise as a patient. Here’s what she experienced:

“When I was still working, I learned that Parkinson’s affected my ‘public speaking’ ability. So, starting our discussion with a Q&A format helped me feel that it wasn’t presenting but rather just talking with colleagues. Also, speaking ‘as a patient’ meant I didn’t have to pretend…like if the right word didn’t come to me quickly, it was okay. The PatientsLikeMe team made it easy.

I had to work out my thoughts in advance and at first had considered sharing ‘data’ about PD. As I thought further though I realized that they live with data, they don’t live with PD. Instead I tried to share my experience through storytelling, hoping I could bring them into the life of a PWP on a daily basis.

Two things came as a surprise, both out of the questions I was asked by the UMD team. When we opened up the discussion to questions, there was some good discussion about the hurdles of participating in a clinical trial from the patient’s perspective. But then the researchers asked me questions I didn’t expect – not inappropriate, just surprising to me. One [of] the researchers wanted to know how my condition affected my family.

Another asked me, “what would my experience be like if I didn’t have PatientsLikeMe as a resource?” That one made me think. I hadn’t realized that I’d probably have no idea what I didn’t have. I would not know that other patients often have this onset of anxiety in public that they’d never had before. I would not know that there is a skin condition associated with PD. I would have a list of meds I kept and probably wouldn’t be able to go back and see start and stop dates because I wouldn’t have bothered saving that data…..

Patient participation in research is more than recruitment and trial results. I think a patient should participate in the study design process – before the Institutional Review Board approves. Be more creative in the design:

  • Ensure patients who meet the study criteria KNOW about the study – extend your reach to leverage support groups, forums and patients.
  • Ensure patients have ACCESS to the study – if your study requires multiple visits and has a handful of study sites, you’re limiting yourself to a finite number of potential participants.
  • Ensure patients learn about the study RESULTS – we need to know what we did mattered so we’re inspired to do it again, so we’re inspired to tell others.

For the PD community, a recent study found that only 1 in 10 patients with Parkinson’s disease have participated in a trial. PARTICIPATE! My experience is that YOU have to go find them. Sure, if you see a doctor in an academic setting, you’ll see flyers posted on the bulletin boards about trials (your provider may or may not mention to you). PatientsLikeMe has a clinical trials tab (did you know that?). PD has Fox Trial Finders and I suspect there are other condition specific registries. Or go to http://clinicaltrials.gov/ and search a database of private and public clinical trials. Together we can all help each other and ourselves!”

More about the 2014 Team of Advisors

They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.

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Making a difference for Parkinson’s disease in April

Posted April 2nd, 2014 by

 

After getting diagnosed with Parkinson’s disease (PD), PatientsLikeMe member Ed recalled “I needed to talk to people who had the disease, because only they knew what it was like…and could help me get through that initial shock… we can do much better fighting the disease as a group than we can as individuals.” And that’s why all throughout April, everyone impacted by PD is coming together to get the word out for Parkinson’s Awareness Month.

PD is a chronic and progressive movement disorder that affects around 1 million people in the United States, and symptoms of the condition include tremors, stiffness and impaired balance. There is no known cure for PD, but medication and surgical options can sometimes relieve a few symptoms.1

To get PD Awareness Month started, check out one of the many events being organized in April by the Parkinson’s Disease Foundation (PDF) and the National Parkinson Foundation (NPF). You can join the NPF’s Team Hope, get involved in the PDF’s Parkinson’s Advocates in Research (PAIR) program and find local Parkinson’s resources and organizations.

If you or someone you know has been recently diagnosed with PD, head over to the PD community at PatientsLikeMe, where over 8,000 members are tracking their symptoms and sharing their experiences.

Spoiler alert! That isn’t all Ed had to say about his own experiences and what sharing on PatientsLikeMe means to him. Keep an eye on the blog later this month; we’ll be posting his recent video interview.


1 http://www.pdf.org/en/about_pd