The Doctor Is "In"... Your Living Room

Yesterday kicked off an exciting and intensive two-day gathering of researchers, health care providers, administrators, patient organizations, people with Parkinson’s and care partners on Long Island, NY. We gathered for the 2013 Merinoff Symposium, “Leveraging Telemedicine to Deliver the Highest Quality of Care to All Parkinson’s Patients,” hosted by the Feinstein Institute for Medical Research at North Shore–LIJ Health System and co-hosted by PDF, other national Parkinson’s organizations and telemedicine organizations.

Merinoff Symposium on Thursday, April 11

We are charged with exploring how telemedicine can enhance care for those living with PD, and creating a call to action for the future.

What is telemedicine? Also referred to as “virtual” office visits, it means being able to see your doctor or other health care professionals remotely, using your computer. You both would be able to see and talk to each other using video.

The common perception is that telemedicine is a futuristic tool used only when people live in remote rural areas, miles away from a movement disorder specialist, neurologist or primary care physician. What was made crystal clear by the end of day yesterday is that telemedicine, or what may be more accurately described as technology-enhanced care, has broader potential to transform care and services for all people PD, regardless of where they live. This transformation will result in providing people living with PD the care and services need, when they need it.

This point was driven home by the symposium’s panel of people with Parkinson’s and care partners. This panel was organized by PDF, moderated by our Executive Director, Robin Elliott and included PDF Research Advocates Jay and Marilyn Phillips. The panel was spot-on in identifying the range of issues that can be addressed by telemedicine - lack of access to core services and resources, challenges to managing the multiple medical visits across specialty areas, limitations of three-month or six-month physician visit intervals in providing an accurate picture of the challenges of living with the disease and the inability to participate in a clinical study that is too far away.

The panel was also essential in helping symposium attendees gain a deeper understanding of how partnering with patients can accelerate the adoption of telemedicine and reap the benefits at a faster rate than what would occur without this partnership. Panelist Steve DeMello discussed the need for patients to be engaged in “creating the science” and urged the audience to move away from a model where providers, “watch me do things and then tell me things.”

This theme of patient engagement is near and dear to the heart of those of us here at PDF, where we have been advocating and pioneering ways for people with PD and care partners to work in partnership with the research community to bring about treatments at a faster pace. Our Parkinson’s Advocates in Research program has trained 200 Research Advocates around the country through our Learning Institutes. These Advocates, along with many others with PD, are ready to join forces with health care providers, researchers, patient organizations, administrators and policy makers to create a new way of doing business when it come to living with PD in the present and determining the future.

It is time to embrace and act on the invitation of panelist Jay Phillips when he said, “we are here and we are ready to work with you!” It is time that we recognize the value and necessity of this outstretched hand and how essential the offer of this partnership is to the success, not only of telemedicine, but to health care and research as a whole.

Are You a Driver and a Partner? Notes on ASENT and Patient Collaboration

Two Saturdays ago, in a Washington DC hotel, PDF pulled off an interesting little coup in its long-term bid to bring people with Parkinson’s (and other neurological disorders) into the center of conversations about the process of clinical research and drug development.

 The occasion was the plenary session on the last day of the annual scientific conference of the American Society for Experimental Neurotherapeutics (ASENT), and the title of the session was: New Models for Collaboration: Patients as Drivers and Partners in Neurological Research. I have served on the Board of Directors of this very worthwhile organization for three years now, and they asked me to help put together an expert panel on this important topic.

Note that the title of the panel referred to patients and clinical research participants as Drivers, and Partners.  Not as Research Subjects, or Attentive Audience Members – important as these roles are in the right context – but as Drivers, and Partners.  In other words, as full players in the process, shouldering their way up against the other weighty and recognized players in clinical research such as the scientists, the government regulators, and the industry collaborators (e.g., drug companies and biotech firms).

Why is this so important?  The answer is that the needs, opinions and requirements of people who live with neurological disorders have an absolutely crucial role to play in the way clinical research in the United States is organized, conducted and evaluated.  What should we be measuring in a clinical trial (often described as “outcome measures”)?  How should participants in trials be treated – from the information that is shared with them to the reimbursement for necessary travel expenses that is provided to them?  And how can recruitment be accelerated, and retention secured, so as to assure that each trial is initiated and completed in the shortest possible time – for the benefit both of the participants’ well-being and the company’s pocketbook?  On these and related issues, patients/participants have important things to say, and important opinions and needs to be accommodated.

Members of the panel, who were assembled and directed by my colleague Veronica (Ronnie) Todaro, PDF’s Director of National Programs, were diverse, interesting and eminently well qualified for the task.  Two presentations in particular stood out for me: Dr. Petra Kaufman, M.D., M.Sc., Associate Director for Clinical Research at NIH/NINDS, who presented a brilliant and comprehensive overview of how patient organizations can be involved in recruitment and retention for clinical trials of new treatments in brain disorders; and Dr. Russell Katz, M.D., the long-time Director of the Division of Neurology Products at the US Food and Drug Administration, who listed the many ways in which patients can be involved in the process of drug approval.

There were three things that I found most exciting about the panel.

1. First – this was most evident in the presentations of Drs. Kaufman and Katz - it gave an encouraging and convincing picture of the many ways that patients can get involved in the clinical research process.
2. Second, the experience filled me with hope that the health care system is at last ready to consider how patients can be integrated into the clinical research process, to the benefit of all the major partners and to the lasting assurance of the people who live with Parkinson’s and other neurological disorders.  (One reflection of this was the healthy size of the audience of doctors and scientists that we attracted – on a Saturday morning, no less, at the very end of the meeting!).
3. And third, it gave me a great sense of pride to see how my own organization, the Parkinson’s Disease Foundation, was playing such an important role in this process -- not only in behalf of Parkinson’s community, but of all groups that are committed to solve brain disorders.  (A sparkling reflection of this was the masterly performance as moderator of Linda Morgan, a talented MBA pharmacist who is a leader of PDF’s national People with Parkinson's Advisory Council and one of the first advocates active with our Parkinson's Advocates in Research program).

ASENT will soon be making available the slide-decks of our speakers to a wider audience.  We will keep you posted on this blog when they do.

What are your suggestions and opinions? Are there additional ways in which patients can be usefully involved in the clinical research process?  Do you feel as if you have the opportunity to be a driver and a partner?

PAIRing up for Research: The Importance of Saying Thank You

Last week, we were excited to see a great example of pairing up (the slogan for our Parkinson's Advocates in Research, or "PAIR" program) at Vanderbilt University Medical Center (VUMC). In an article entitled, "Events honor early patients of novel Parkinson's study," VUMC reports on their study of deep brain stimulation surgery as a treatment for early stage Parkinson's. DBS is approved by the FDA as a treatment for mid stage Parkinson's, but not for those with earlier stage PD.

We were impressed to see how VUMC thanked their volunteers, all people with Parkinson's, who made the study possible. As the article notes, their 35 volunteers did an extraordinary thing by agreeing to either undergo surgery early on in their Parkinson's or to receive standard medicines. Each person also dedicated five separate weeks of their time over the course of two years.

As with all clinical studies, we only learned new lessons about PD because of those volunteers.

Will You "PAIR Up" for Parkinson's Research? 
This story rang true with PDF because VUMC's event reflects values similar to those that drive our PAIR program.  At PDF, we believe that people with PD must be primary partners in research­ as participants, but also in other capacities,­ in order for us to speed new treatments.

The importance of saying thank you is particularly key, because of findings such as those from a 2007 CISCRP survey which say that:

• 79 percent percent of clinical study volunteers report that they never hear from the sponsor or research staff after a trial has concluded, and; 
• 83 percent of volunteers say they are never told the results of their trial

Through PAIR, we are committed to changing this statistic and to ensuring that someone says thank you.  We are doing this in part through our signature PAIR Up for PD Research forums each April that - similar to VUMC -­ publicly thank people with Parkinson's disease who have volunteered for research studies.

    Courtesy of PDF Research Advocate Carolyn Weaver, made for her fellow Research Advocates.

Most of these forums are led by one of PDF's 180 Research Advocates (all of whom have completed one of our in-person PAIR Learning Institutes) in collaboration with local researchers.

PDF Research Advocate Bob Hankin at an April 2012 PAIR Up for PD Research Forum in New York, NY.

The thank you at the forum is usually a simple public recognition along with a small token from PDF (see first and last photos).  But it's an important step in ensuring people with PD are at the front and center of research.

We applaud VUMC's efforts to communicate with their volunteers and say thank you.  

What do you think about their efforts? Will you PAIR Up?

Visit our website to learn more about getting involved with PAIR, through our upcoming training for people with Parkinson's and care partners in Oak Brook, IL or our new online course.