Over the years I have had Parkinson’s, I become progressively more enthused by and protective of patient interests within the field. It would be nice to say my commitment is equally applicable to all areas of patient treatment but a man can only do so much and so I focus exclusively on Parkinson’s.
Patient involvement, in pharmaceutical research and clinical trial design has become a necessity for clinical researchers. Put simply, if you don’t solicit patient involvement at as many stages of the research process as you can, you will be marked down by the funders. In some cases it will even preclude receiving funding. The same goes for drug companies, obliged by the licensing agencies to demonstrate credible bilateral patient engagement.
Drug developers need patients, not only as participants in clinical trials but also as participants in coproduction. In large part these initiatives have been driven, not by pharmaceutical companies eager to hear “the patient voice”, but by researchers recognising that their research will vanish down the Suwanee if they do not.
Obviously that’s a slightly dark and rather cynical position and I put it forward, in part, by way of playing devil’s advocate. I do not believe for one second that this is representative of the kind of board level decision-making within the pharmaceutical industry as a whole. There are a good many drug companies that do, deep down, have a belief in the value of fully integrated patient engagement at every stage of development. And when that is achieved in a non-tokenistic manner, the value to all parties is significantly enhanced.
So you receive invitations to be part of a board/discussion group et cetera. What do you do?
Well it’s important to know who is asking for your involvement. Do they use words like dopamine, receptors, on/off, dyskinesias, nonmotor symptoms and so on, delivered by earnest men and women anxious to know your thoughts?
Or are their sentences replete with words and phrases like leverage, optimising market share, identifying target markets, stakeholder segmentation, and managing consumer expectations, delivered by men in suits with rictus smiles?
The answer to these simple questions may help you to decide.
Personally I get tired of listening to this kind of managerial market drivel. If it’s your path, fine go do it. But it’s not my chosen role. Do I sound cynical? Maybe a little.
The role of patient advocates is a tricky one, walking a tightrope between marketing aspirations and pharmacological realities. It doesn’t matter one jot that the marketeers wants to position a drug in such and such a context, if you can see from the data that the side effects profile is unusually bad. The marketeers can bury their heads in the sand if they wish but the fact is that a drug removed from the market is much worse, publicity -wise, than one which never made it to the market. The latter suggests due diligence, the former smacks of incompetence.
Patient advocates rarely have and would, in all probability, not want that kind of personal responsibility. But they do nonetheless seek a voice in the process and it should be the honest opinion of those advocates and not modified to make it more palatable.
The best relationship between drug companies and patient advocates is one where a long-term relationship is created, constructed upon mutual respect and understanding. This is not achieved overnight. It takes time and trust. It is a mutual education. And above all, if you will forgive me one piece of managerial gobbledygook, it is a win-win situation.
That’s proper patient advocacy. You’re welcome.