“I don’t understand.”

It’s a simple admission, yet one people have difficulty sharing.

I’m not writing about conversations I’ve had with potential investors or Parkinson’s experts when I share our vision for how to conquer Parkinson’s, where I don’t understand why they don’t want to dig deeply into the data I offer to share. That’s not today’s topic.

I'm thinking about the gap between the availability of scientific/medical information and its accessibility to those for whom it is most relevant - those with the disease under study.

Recently a paper was published in Nature. Anything published in Nature is interesting and important to some of the world’s leading scientists. Ren and colleagues report analyses of data from 863 patients who were part of 11 different studies to show how Deep Brain Stimulators (DBS) and Transcranial Magnetic Stimulation (TMS) can be optimized for the treatment of Parkinson’s. They claim this shows the importance of a new way of understanding the circuits within the brain that drive Parkinson’s.

I’ve read the paper, the supplement and the peer-reviews – several times. And I still don’t understand this.

These circuits appear to connect several important parts of the brain that make sense to connect, which is called SCAN. As an example, consider what the brain needs to do when we want to perform movements. The parts of the brain for planning and for movement should be connected. And they are part of this SCAN circuit. But that’s as far as I can get. And I understand circuits – I majored in electrical engineering in college and continue to tinker with circuits.

When I looked at this paper the first time, I was impressed by the way the authors looked at the neurophysiology from several different approaches, including in setting of electrical, magnetic and pharmacologic stimulation. The data are a mix of retrospective analyses and a prospective, 36 patient trial randomizing people with PD to standard TMS or TMS targeting this brain circuit of interest. But the results of this randomized study are not presented to allow full understanding. For example, while disclosing effects of MDS-UPDRS Part III, it does not appear that the study asked patients how they felt during therapy (MDS-UPDRS Part II not measured). Also, this randomized trial looked at the effects for 14 days. It’s remarkable that there was an effect of this new approach to TMS 14 days later. And any patient with Parkinson’s will want a better 14 days. But we need to know much more about the durability of the therapy’s effect before claiming that a meaningful advance is here.

I’m stuck because I don’t understand the science. If someone with my background can’t understand it, then I start to imagine the frustration patients feel when they read a news report and then try to dig in further to decide whether this is worth their pursuit.

With all the science out there impacting so many people, why don’t journals provide understandable summaries for patients? This one seems okay but may not be enough. This one is very enthusiastic about the study results. Is either one striking the right tone and level of detail?

We could use AI, but that would require a person to have access to the full article and any supplementary data that could be uploaded. Since I don’t think that kind of access is common, I did that, and asked ChatGPT 5.2 to provide a simple summary which I then asked for more simplification (and brevity). Here’s what it provided:

This Nature paper says Parkinson’s disease may involve an over-connected brain circuit called the somato-cognitive action network (SCAN), which helps coordinate whole-body actions (not just one hand/foot muscle area).

The authors found:

People with Parkinson’s showed stronger-than-normal connectivity between SCAN and key deep brain movement regions.

Effective treatments tended to reduce this “hyperconnectivity,” including deep brain stimulation (DBS) and levodopa (medication).

In a small randomized study (36 patients), targeting SCAN with noninvasive magnetic stimulation (TMS) improved motor scores more and faster than targeting standard motor “effector” spots.

Why you should care: this could lead to more personalized treatment targeting (better choices of where to stimulate) and possibly better noninvasive options—but bigger studies are still needed before it changes routine care.

This does not feel satisfying to me.

Tell me, what perspectives and information would you want to read as a lay summary from leading medical journals?