13 posts from April, 2012

The “Immense Benefits” of Online Health Reporting: An Interview with ALS Study Author Dr. Thomas Meyer

Posted April 27th, 2012 by

Earlier this month, we told you about a new study showing that ALS patients reporting their health status over the Internet (using a rating scale known as the ALSFRS-R) is just as reliable as a trained nurse rating the patient’s score.   Now, we’d like to share our interview with lead study author Dr. Thomas Meyer, a neurologist at Charité University Hospital in Berlin, Germany.  What role did PatientsLikeMe play in this research?  And what are the study’s implications for the future of clinical trials?  Find out that and more in our interview with Dr. Meyer below.

Dr. Thomas Meyer, Neurologist at Charite University Hospital in Berlin

1.  When did you become interested in patient-reported outcomes?

In 2005, we first used tablet PCs in our outpatient department to capture patient-reported outcomes (PROs). To us neurologists, PROs play a crucial role. Many neurological conditions can be captured by means of PROs only – I am thinking of pain in neuropathies, spasticity in multiple sclerosis (MS), the subjective perception of movement ability in Parkinson’s syndrome and dyspnoea (breathing difficulty) in neuromuscular conditions, including ALS. Given this fact, we neurologists have always listened to our patients a little more carefully so that we can do a good job. Therefore, the systematic capturing of PROs is a natural process to us, and we are most happy to be able to support any advancement and positive development thereof.

2.  Your study showed remarkable agreement between the two ALSFRS-R reporting methods.  Were you surprised that they were so similar?

You are absolutely correct. Correlation here looks like a textbook example of medical statistics. We were indeed very surprised to find that the data were so unequivocal.  Notwithstanding, our previous experience with the offline electronic capturing of ALSFRS-R had taught us that the data captured in a personal interview are very close to those captured in computer-based self-assessments.

A Chart Showing the Striking Similarity Between ALSFRS-R Scores as Reported by ALS Patients (Bottom Axis) and Their Clinicians (Left Axis)

Then we took the next step and progressed from offline to online assessment. Other work groups had already shown good correlation between the face-to-face capturing of the score on the one hand, and data capturing over the phone on the other. That was very useful upfront information for us. Insofar, the success of our study didn’t come as a complete surprise to us.

3.  How did Dr. Paul Wicks, PatientsLikeMe’s Director of Research & Development, contribute to this research project?

Our great interest in the issue of PROs in ALS goes back a long time. Nevertheless, we were very much aware of the fact that PatientsLikeMe is by far the most experienced organization with regard to PROs worldwide and also the one that identifies with this topic most. So, a small group of four of us flew from Berlin to Boston to introduce our clinical trial to PatientsLikeMe and to learn from their experience. Once we had concluded the study, we flew to Boston once again to see Paul and to prepare the paper. We profited immensely from Paul’s input, and he gave the manuscript a superordinate perspective.

PatientsLikeMe Research & Development Director Paul Wicks, PhD

So it is for a good reason that he is listed as co-author of this publication. Overall, this scientific research project was a collaboration between the Charité University Hospital and PatientsLikeMe. I believe it is also an important, gratifying and affirming experience for PatientsLikeMe to see that in terms of methodology the online capturing of PROs is at least equal to an interview conducted face-to-face. I can even imagine situations where the online mode of capturing PROs is actually better than a personal interview, especially where rather complicated and very private issues are addressed. This is just one of the many points we discussed vividly with Paul.

4.  Do you believe online patient reporting will become an acceptable practice for clinical trials?  What are the ramifications if it does?

I can very well imagine that the online capturing of PROs will one day become an integral part of clinical trials. It is quite an obvious thing; however, owing to regulatory requirements, it will be quite some time before it will actually be possible to implement this. The bottom line is that clinical trials will have to be conducted for each score demonstrating equivalence between paper-based and web-based capturing. Not all of the scores have actually been evaluated for online capturing. Another critical point surely is Internet access.

Having said that, it certainly also depends on the patient group and the actual medical condition under examination. I suppose that from a medical-ethical point of view it is problematic to exclude patients from a trial simply because they are unable to realize an online completion of the score. In this regard, I believe the first step to be taken must be to demonstrate equivalence between online and offline capturing of the score. Then one could give patients the option of using online assessment in the context of participating in a clinical trial and see what they would prefer to do.

The benefits would be immense. This method could highly enhance the quality of the data, the efficiency of data capturing and, not least of all, it would help reduce the costs of a clinical trial. I believe that online assessment will be a matter of course in the future, but not immediately.


A Peek at the April Newsletter for Members

Posted April 25th, 2012 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our April edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.

MONTHLY MUSINGS

What’s with sharing, anyways?

We’ve said it before, and we’ll say it again – we believe in the power of openness. By sharing your experiences, healthcare can be changed for the better.  You can monitor your health status and make changes accordingly; you can find out you’re not alone; and both patients and organizations can do research based on your real-world experiences.

Every single patient on our site contributes to this change.  When you add conditions, treatments and symptoms, you’re entering data that enables others to learn from you.  The way we see it, when everyone shares, everyone benefits.  To see how, check out these reports and dig deeper into the individual stories and data.

Treatment Reports
Things you can learn: How is this treatment working for other patients?  What side effects have they reported?  What are the most common dosages?

Symptom Reports
Things you can learn: How many other patients have experienced this symptom?  What are they taking to treat or manage it?  How severe is it for them?

Condition Reports
Things you can learn: Who else has this disease?  When did they experience their first symptom?  What are some of the most common treatments?

Thanks for everything that you’ve shared – and continue to share – at PatientsLikeMe.  Here’s to all that will be learned in 2012 as a result!

Kate, Emma, Liz, Jeanette & Sharry

Kate"" Emma"" Jeanette"" Sharry""

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