{"id":1671,"date":"2021-11-29T13:27:26","date_gmt":"2021-11-29T12:27:26","guid":{"rendered":"https:\/\/demoucelle.sites-stag.agency\/uncategorized\/outside-in-perspectives-on-parkinsons-research-from-an-impatient-patient-blunt-businessman\/"},"modified":"2026-04-04T08:41:39","modified_gmt":"2026-04-04T06:41:39","slug":"outside-in-perspectives-on-parkinsons-research-from-an-impatient-patient-blunt-businessman","status":"publish","type":"post","link":"https:\/\/demoucelle.sites-stag.agency\/fr\/uncategorized\/outside-in-perspectives-on-parkinsons-research-from-an-impatient-patient-blunt-businessman\/","title":{"rendered":"Outside-in perspectives on Parkinson\u2019s Research from an Impatient Patient & Blunt Businessman"},"content":{"rendered":"

Drawing on their experience as business consultants and personal development coaches, Patrick & Anne-Marie Demoucelle make a blunt, threefold appeal to Parkinson\u2019s disease researchers; meeting patients, adopting business practices, and nurturing positivity, could make them even more effective in their important work — and satisfied in their lives.<\/em><\/p>\n\n\n\n

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When Patrick was diagnosed with Parkinson\u2019s disease (PD) on his 40th birthday, he received mountains of information about what PD is, its symptoms, and its impact. <\/span><\/p>\n\n\n\n

Of the countless \u2018facts\u2019 he was presented with, two statements were especially striking. In fact, they were two conflicting statements. From his doctors, first: \u201cYou still should have ten-to twelve (good?) years ahead of you.\u201d From researchers, later: \u201cIn ten years there should be a cure\u2026\u201d Which made us wonder: \u201cIn ten years, would he be nearing death or be nearly cured?\u201d<\/span><\/p>\n\n\n\n

We are now 16 years on from his diagnosis, during which time we founded the L'association Demoucelle Parkinson<\/a> to raise funds for Parkinson\u2019s research, and time has proven both statements to be wrong. Patrick is far from dead, yet far from cured. When Patrick is \u201con\u201d he wants to shout at the doctors: \u201cI am still alive and kicking!\u201d. When he is \u201coff\u201d, he wants to shout at the researchers: \u201cWhere is that f*****g cure?\u201d<\/span><\/p>\n\n\n\n

Because, quite honestly, what we most want is a cure. As quickly as possible. Because after 16 years with Parkinson\u2019s, life is tough. <\/span><\/p>\n\n\n\n

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<\/a><\/span><\/p>\n\n\n\n

Patrick is a \u2018fighter\u2019. During this September\u2019s Brussels 20km, he finished in 2 hours 4 minutes, having managed to run for 13.5 km and been pushed in a stroller by a team of friends for the rest. He makes a conscious effort to live life to the fullest. But he\u2019s had to give up so many things that previously brought him joy, such as traveling and attending dinner parties with friends. And even the most ordinary things, like eating and going to the bathroom, have become a real struggle. <\/span><\/p>\n\n\n\n

So yes, we are desperate for a cure. Quality research is our only hope. We need you! And we have three ideas drawn from our careers as business consultants and personal development coaches, that we would love you to consider. We think these might make you even more effective in your job (and satisfied in your lives).<\/span><\/p>\n\n\n\n

\u00a0<\/span>The three ideas are: (1) Meet patients, (2) Embrace business practices, (3) Nurture positivity.<\/span><\/p>\n\n\n\n

Meet patients<\/span><\/h4>\n\n\n\n
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<\/a><\/span><\/p>\n\n\n\n

As part of our work with the Demoucelle Parkinson Charity, we often visit PD research centers. While there, we make a point of asking \u201cHow frequently are you in contact with PD patients?\u201d (polite phrasing) or \u201cHave you met someone with PD?\u201d (direct phrasing). The answer is almost always disappointingly negative. Most researchers say that Patrick is the first PD patient they have met.<\/span><\/p>\n\n\n\n

How come? Too busy with research? No need? No access? No interest?<\/span><\/p>\n\n\n\n

Come on, let\u2019s change that right now! How can you work \u2018for\u2019 someone you have never met? <\/span><\/p>\n\n\n\n

Get into the habit of meeting and finding out about who it is that, ultimately, you are working for i.e. \u00a0PD patients! <\/span><\/p>\n\n\n\n

They are the true customers of your PD research project not your bosses, the science magazines, the medical community, the big pharma, or whomever else will purchase the output of your research. The end-consumer is the one who will put the pill into her mouth or have the vaccine injected into his upper arm. Your end-user is the PD patient.<\/span><\/p>\n\n\n\n

You know, whenever we visit research teams, they tell us how inspiring it is to meet an actual, real, live patient. They say it gives them a motivational boost. It provides such a sense of purpose. Don\u2019t deprive yourself of the opportunity to feel (even) better about your work. To feel that all those hours, days, weeks, months, even years are worth it. (And, patients will be happy \u2013 even relieved \u2013 to know that you are even more<\/em> motivated to do what it takes to help find that cure.)<\/span><\/p>\n\n\n\n

So, go visit some patients, don\u2019t invite them. Observe them closely, don\u2019t look away. Show interest in their struggle by asking questions rather than providing answers. Don\u2019t talk \u2018science\u2019, talk \u2018human\u2019. Identify what they need, not what you<\/em> think they need. Learn from them, don\u2019t lecture them. And give them hope (but we\u2019ll come to that in our third message).<\/span><\/p>\n\n\n\n

Next step<\/u><\/span>: Ask yourself: \u201cWho do I know that is a PD patient and who I could go to see?\u201d<\/em> Then give him\/her a call and set up a visit!<\/span><\/p>\n\n\n\n

Embrace business practices<\/span><\/h4>\n\n\n\n

We are incredibly impressed by the work researchers are doing. We certainly couldn\u2019t do it, that we know! But, based on our long experience in the corporate world, we feel that many research teams are not yet working at their fullest potential. In our humble opinion, this is simply because they have not (we\u2019d prefer to think \u201cnot yet\u201d) embraced the \u2018top performance\u2019 practices that so many companies have adopted. <\/span><\/p>\n\n\n\n

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<\/a><\/span><\/p>\n\n\n\n

Research is like business in many ways. Both need seed capital (equity or debt) to start-up and then to finance growth. Both are confronted with budgets, cash-flows, and difficult investments decisions. Both have specific cultures. Both require management and leadership skills. Both have a risk of failure. But above all: both involve people and teams. <\/span><\/p>\n\n\n\n

And that\u2019s where we see a big difference: corporate teams realize that communication, trust, teamwork, cooperation, learning, training, tooling, motivation, rewards, are all aspects of getting the job done that require active management. We\u2019re not sure research teams pay the same attention to these elements, or to put it mildly, give them the same importance.<\/span><\/p>\n\n\n\n

\u00a0<\/span>Which skills developed in business could be brought into research? We can think of many:<\/span><\/p>\n\n\n\n