Wow, never thought this would happen! Please, let's take advantage of this rare invitation to be heard. -Laura

From the PAN Newsletter:

Parkinson's Action Network

Opportunity to Comment on Performance Measures for Parkinson's Disease

American Academy of Neurology Wants Comments on Measures for Health Professionals

PAN has received a rare opportunity for advocates to comment on proposed performance measures for Parkinson’s disease developed by the American Academy of Neurology (AAN). This is a chance for people living with Parkinson’s disease to have their voices heard on issues impacting the care they receive.

AAN developed 10 performance measures for doctors and other eligible health professionals who provide care to individuals diagnosed with Parkinson’s disease. The measures are intended to be used to calculate performance and/or to report measurement at the individual physician level. The 10 performance measures are listed below:

Measure 1: Annual Parkinson’s Disease Diagnosis Review
Measure 2: Psychiatric Disorders or Disturbances Assessment
Measure 3: Cognitive Impairment or Dysfunction Assessment
Measure 4: Querying about Symptoms of Autonomic Dysfunction
Measure 5: Querying about Sleep Disturbances
Measure 6: Querying about Falls
Measure 7: Parkinson’s disease Rehabilitative Therapy Options
Measure 8: Parkinson’s disease Related Safety Issues Counseling
Measure 9: Querying about Medication Related Motor Complications
Measure 10: Parkinson’s disease Treatment Options Reviewed

PAN encourages you to use your personal knowledge and experience to help inform AAN as it develops its performance measures for Parkinson’s disease. The multi-faceted nature of Parkinson’s disease symptoms and each individual’s unique experience with his or her own neurologist supplies the best experience and knowledge available for these comments.

The open public comment period on the Parkinson’s disease measures runs through 6:00 p.m. EDT on Friday, October 9, 2009. Anyone may comment on each of the 10 individual measures and the measurement set overall. Please note that all posted comments will become part of the public record. To view and comment on the full measurement set, visit www.aan.com/comments.

The measurement sets we are asked to comment on are a little hard to find. Go to
http://www.aan.com/globals/axon/assets/6329.pdf

for the 45 page document. I am also glad they are seeking our input, but the comment period started Sept 9th. it is over Oct. 9th, yet the first notice we were given was on Oct 2nd. Alot to read and digest and comment on in a week. I read it, but still not sure what these measurments are for, but they seem to have somethhing to do with coding for insurance. It states they are not to be used as clinnical guidelines. I would like to understand better how they are related to improving individual patient care. Can anyone else help out with this?
I would also respectfully ask the AAN why there wasn;t even one PWP on the committee that wrote the measurement sets (see p. 3 of the document)? There were reps from PDF, NPF, APDA, medical orgs, insurance companies --- but no patients.

Agree. I'm all for helping doctors, but they just don't get it; they think we are stupid.

paula

Linda said:
I would also respectfully ask the AAN why there wasn;t even one PWP on the committee that wrote the measurement sets

I agree, Linda. I am so tired of people writing our future not taking the time and effort to ask us - those who lives with the disease dayto-day - what needs to be included in our care plan. Every other "service" asks for consumer input, so why not our health care?

and the short time limit is a bit ridiculous. It's like an afterthought - "Oh, yeah. We need some patient input here." (Like they'll read it!

GRRRRRR! sorry to be so negative. It is nice they asked.

Peggy

i ended up sending my comments. The comment form is set up so that each Measurement is separate -- so you can respond to one, two or any number of the measurment sets. The last box is for general comments. In here I wrote, "Thank you for requesting patient comments on these measures. However i noticed there was not one patient on the committee that wrote the measures. The perspectives of PWP should have been sought from the very beginning of this project, not just at the end."

If we want things to change and for patients to be treated as equal partners in our health care, doctors and medical associations like the AAN need to hear from us .... the more comments about including patients at all stages, the better. As Conductor wrote --- this is our chance for input.

With all respect, I don't feel the AAN is to blame here. While I certainly think that the whole medical community sorely needs an overhaul when it comes to research design, clinical practice, and patient involvement; I don't think we can expect much more right now. The entire medical profession is centered on standards and scientific validity. They can't think or act independently of the world they've boxed themselves into. For the AAN to recruit directly for PWP to serve on a committee is heretical - really, if we think about it, this flies in the face of all they know- how could they possibly circumvent the "system" to recruit directly for patient input? This would negate the idea of control that dominates the profession. When a group can't outright address problematic, outmoded research design (what happens to validity when you can't even agree on a diagnosis most of the time?), or question the lack of progress in clinical diagnoses and practice... hence, their feeble call for "measures". (pardon the sarcasm)

In a community defined by acronyms like the AAN, we get at the committee table more acronyms (PDF, PF, APDA). Problem is that these orgs were selected to represent us as real people; individuals. I'm left wondering; given that it doesn't seem any of us were contacted to contribute, just how patient input was gathered and shared? I checked the websites of these groups and each has a notice on their home pages about the AAN invitation. PAN, while mainly a legal group, shared the info with me via their October e-mail update, although clearly we've had a month to do this. This isn't their domain, yet they were the only direct notice I received.

I will definitely ask the AAN why they do not directly include us, but I think it's because they largely rely on a group of splintered PD "patient" groups- they would have no idea where to find us except through those pathways. Largely, the blame lies with these groups because they have made no connections here or with other PD peeps- could they not create a survey to share with those of us registered with them? Why do they not have a patient rep here on the forum? Why was no contact made with 23 and Me - they are working with patients to collect data? We might say too, that the blame lies a bit with us. The AAN really is making a step toward bridging the divide, but until we have a patient advocacy group; a cohesive voice, that is founded by us and for us, we'll continue to be overlooked. Many of us with PD lose our voice, it's softened, or difficult to follow; this is one way to get it back.

Laura

The question of how they find people with PD and involve us is a worldwide issue with a wholly possible solution - we are here, we all visit our doctors, and it is my belief that patient input can and should be channeled through those we get to interact with, our neuros. A simple questionaire to fill in while waiting for an appointment could be a solution. There is a need to work in alliance and they too need to realise that. I will never understand how the simple concept gets lost in the rush to consult all the acronymic entities! Perhaps patient advocacy should start in the waiting room, those of us online, while we have a powerful voice, only represent the few, but can help motor decision making for the many. As such there is a worldwide lack of patient empowerment, and it is time the medical profession geared its needs to the patient not itself. A unified approach to advocacy could be a start in the right direction....... Laura this is something that could be raised at the WPC.....

Lindy

Laura made an excellent point. I agree with others point that patient's participation is needed, but the question is how do you go about getting a "real" representative for patients?

I speculate that AAN is viewing various PD organizations as "representatives" of patients. Whether it s a valid choice or not, I cannot comment on that, with my limited knowledge about these organizations.

I read AAN's guidelines carefully and brought it down from 45 pages to 4 pages of relevant info. Overall, I found this document to be quite comprehensive and well thought out guidelines. Document also had good rationale for the 10 parameters chosen to evaluate PD. I posted my version of Unfortunately, copyright issues prevented me from posting the summary here..

I sent my comments and additions to AAN about the guidelines. I also asked a few questions about their mode of evaluation, comparison and analysis of alternative treatments. Lets see if I get a reply!

Girija

Girija

OK Maybe the AAN thought they were doing the right thing by providing a way for the public to comment. However many people were totally bewildered by the document at first, and gave up. With comsiderable time and effort, a few did come to understand it and felt able to comment. It could have been more user friendly to get the involvemnt of more people, and if we don't tell them so, how will it be different the next time?

Also the AAN is not the only group that thihnks that inlcuding representatives from disease advocacy groups (like PDF, NPF, APDA,)on commitees like these is equivalent to (or better than) including PWP. Slowly this attitude is changing, but we need to demand to speak for ourselves, at every opportunity.

Jackie Hunt Christensen had a great op/ed published in the Washington Post in June, " "I Can Speak for Myself, If You'll Let Me Do So" that powerfully explains why we need to be heard on this subject. you can read it at :
http://www.sehn.org/web2printer4.php...e_14-3.html#a3

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