What's wrong with clinical trial process? A participant's perspective

I really want researchers to find ways to slow or reverse progression of the disease, and to find ways to make the many symptoms less bothersome (insomnia, urinary incontinence, lack of appetite...)  So I'm motivated to participate in research (which means clinical trials - see this article for more information).

From PDTrialTracker.Info

Here's what has happened when I tried to sign up for clinical trials:

• When I was first diagnosed, and not taking any meds yet, I contacted the local research center who said... Oh, we're not doing any studies on PD now.  They could not have sounded more bored.  And though I left email, phone, address, they have not contacted me.  Not once.  In two years.
• I called a trial in a neighboring state, but they wanted me to go there once a month for a year.  This means my husband would have to drive me at least 12 times, as I can't drive that far any more. (A train takes longer, and unexpectedly requires climbing up or down steps - not remotely disabled-friendly.)
• When I looked for trials anywhere within driving distance recently, the only trial I could participate in was a 3 hour drive one-way, and required repeated visits.  Not near public transport - and in the middle of nowhere.  Um, who is going to go there?
• I was looking through trials, and one looked possible, until I noticed that, not only do they want monthly visits, they want to do a lumbar puncture at each visit (that's a puncture of the spine to get spinal fluid).  That means, at the very least, a blinding headache.  I have to ask the clinicians who dreamed this up:  would you be willing to have this procedure performed on you once a month?
• Tried to enroll in a study about tracking PD symptoms on a Smartphone - twice.  Once was a Samsung phone; one an iPhone.  I had problems with the software on both phones.  Emailed the contact person - in one case, after instructing me to re-install the software, the response was, I guess it doesn't work with your phone.  With the other phone, never got an answer. 
• Clinicians had come to a local conference of pwp looking for participants in their trial.  It sounded intriguing, and didn't involve any dangerous testing.  When I was screened by the clinician later, because I have atypical Parkinsonism (no tremor, but balance issues), she suddenly wasn't interested.  Well, if you're still doing well in a year, give me a call; if we're having trouble getting participants then we can include you.  That was welcoming.
• A guy in a suburb of a major city emails me about his trial - 6 hour drive one way - but he thinks I should participate, and be happy to go there monthly.  His tested treatment happens to be known to make another medical condition that I have worse. so I wouldn't consider it; he is sure it's not a big deal and is perfectly willing to risk my health for his trial.  Update:  When I looked up this trial, it wasn't recorded on ClinicalTrials .gov, although it probably should be, by US law.  So who is looking out for the human beings in this trial?
• I've registered on Fox Trial Finder, as well as several other "I'm interested in participating" websites.  Do I ever hear from any of them about new trials?  Rarely to never.
• I do hear from one company that does clinical trial work for large pharmaceutical companies.  What they call me about:  Phase 1 trials of some unknown compound; this is a study to find out if the compound is even safe to use.  They seem uncomfortable when I ask the question, "Is this a Phase 1 or Phase 2 trial?" Scientists do Phase 1 trials on a small number of patients, so if it's dangerous, not too many are harmed.  And did I mention that any resulting harm to my health is entirely my problem?  Oh, and it requires a lengthy drive once a week for as long as the trial goes on (which my husband would have to do). Sounds appealing, no?

I regularly look at ClinicalTrials.gov to see what possibilities are out there.  I'm not diagnosed less than 2 years any more, and I'm not "drug naive" (not taking any PD meds); there go most of the trials.  The few I could still participate in usually don't want me because I'm atypical.  There are a few trials I could do if I was demented or having hallucinations (um, no) or if I'm willing to drive for hours weekly.

In sum, besides the almost standard desire for less than 2 years from diagnosis and drug naive, which is a tiny subset of PD patients, there seems to be a willingness to inconvenience the patients (and their families), casually put them in danger, and generally use them and then spit them out.

Pwp who have been through the actual trial process on potential drugs are equally frustrated by disorganized researchers, being cut off from a treatment that helped their condition improve because the trial is over, and then never being told the results of the study - and since 40% of trials NEVER publish their findings, they might never know. Some of these pwp don't want to be used again, and can you blame them? (See some of Christopher Maycock's excellent thinking on this topic.)

What could attract me, and other pwp, to clinical trials?

• Being treated like a valued customer, not a used kleenex.
• Recognition that my participation involves inconvenience and possible exhaustion. Telemedicine, anyone?
• Treat me like an interested partner - I might have insights that could help you reduce the barriers that are making recruitment hard, as well as insights about what success in the trial would mean to me, the PD patient.  
• Look to include many different kinds of pwp because you don't know which group of us will be helped by your drug/procedure/device. 
• Recognize that I might be risking my health - and plan for that eventuality with insurance (I should not be out of pocket if I'm harmed).
• Tell me about your results and what the next steps are.  For example, can I be involved in the next wave of testing? 
• Provide my physician with all test results and what I was dosed with.  

I don't think any of this is too much to ask.  To their credit, there are researchers that do a lot of this.  Why don't all researchers do this?