Saturday, January 31, 2015

Is There Value In A Patient Perspective Parkinson's Resource Website?

The first and most obvious thing that must be said in response to this question is that it depends on the content of the website.  The fact that a PD resource website has been created by a PWP makes it interesting, if nothing else, and probably at least somewhat unique, but does not guarantee its value.

There are plenty of high value PD resource websites online (MJFF, PDF, NPF, and many more).  A list of recommended resource websites is included on my site.

So what value might such a website have?  It is similar, in my opinion, to the question of what value PWPs might provide as partners in the planning and execution of clinical research, board participants working with major PD organizations, presenters at conferences and more.  

I have given this a great deal of thought.  What PWPs bring to the table is their experience LIVING WITH this disease.  No matter how much doctors, researchers, or organization leaders know or how many PWPs they have observed, they don't have this experience.  

I am not saying this so much for the benefit of doctors, researchers, or organization leaders, because it is clear that many of them already understand this.  We, as PWPs and care partners, need to understand this fact and live our lives accordingly.  We have not only a chance, but in my opinion, an obligation to ourselves, our families, and others with this disease to act accordingly, starting with taking an active role in our own treatment.

As a result of the current focus on patient-centered input and initiatives, I believe there will be more opportunities for involvement as time goes by.  My plea to my fellow PWPs, who I care about so deeply, is to embrace this challenge and meet it head on!  We can make a difference!

So who made me head cheerleader?  Forgive me if my enthusiasm runneth over.  I guess I am trying to follow my own advice.

In any case, I obviously have been questioning the value of my website (an ongoing work in progress), which led to the thoughts expressed above.  I have to believe my books have value or I wouldn't have had them published.  Thankfully, I have received positive feedback on all three.  I have also received good reviews on my blog, which now includes 106 articles and has had over 20,000 page views by people in 66 countries around the world (I am in the process of attempting to include the entirety of my blog on my website).  My recommendations, which include my "Top 10's" for PWPs and Care Partners, are based on many presentations made to support groups, involvement in national programs such as the PDF PAIR program, participation in over 20 clinical research studies including two at NIH, attendance at the WPC in Montreal, extensive book research, media interviews, interaction with fellow PWPs and care partners in my own support groups, listening to presentations at Denver area conferences including last years ground-breaking Global Family Community conference at Keystone and more.

Let me be clear.  I know many PWPs who are much smarter and do FAR more for the PD community.  That said, I have to remind myself that I DO have something to offer.  I feel a need (based to a large degree on my faith, I think) to do what I can.  I have done what I can to try to create value.  I will leave it to others to judge whether or not I have succeeded.

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