What can I say? My faith is restored!

Anyone who reads this blog already knows the frustration with the life sciences industry and its slow pick-up on patient centricity, patient engagement, and diversity in clinical trials. I have seen major changes at a few companies and the Patients as Partners meeting let me know that I have had a truly narrow view. This is absolutely the value of companies being open with their efforts and letting others in the industry know what they are doing in these areas. Now, I am ALWAYS searching for indications of uptake and I did not see a lot of uptake until I sat through the last two days.

I will layout some highlights here and know I will never do this meeting justice. However, go to these Twitter feeds to get details of the two days – here, and here. And, please, if you also attended and have input (and corrections), please use the form at the end of this post.

I have been aware of the Patient Focused Medicines Development effort in Europe for a few years – https://patientfocusedmedicine.org. However, I had no idea that they created a patient engagement training program – www.learning.pfmd.org. Laura McKeaveney (retired, Novartis), Karlin Schroeder, (Parkinson’s Foundation) and Kathleen Capparella (Janssen) presented this session. In her introduction Laura says in discussing the goal of training every biopharmaceutical industry employee:

How are we going to make patient engagement main stream? How are we going to get rid of the hurdles that are put in our way, so that the risk of not doing patient patient engagement in the industry is far greater than the risk of doing patient engagement.

Several pharmaceutical companies collaborated with patient groups and other stakeholders to co-create this training curriculum. The original pharmaceutical companies to collaborate were GSK, Janssen, Roche, Servier, MSD, Novartis, Gilead, and Lilly. Yes, pharmaceutical companies collaborated! The program is free to all unless a company wants it customized. Only then is there a charge. Take the courses!

Of course there were patients and patient advocates, fervent in their discussions about how to work with them to help execute early and appropriate engagement. They are at the obvious core of patient centricity. However, we were reminded to also include the carers (or caregivers) in our efforts. And they are so right.

There were several sessions on diversity in clinical trials. It was refreshing to hear the open frustration of the speakers. COVID has helped this become an open issue. Clinical trials should be done in the demographics of the people who will be using the drugs. While the frustration is real, and COVID has forced pharma’s hand, there is still work to do. I am on a planning committee for the Drug Information Association (DIA) that is planning a meeting for April 27, 2021 to tackle the topic. Keep your eye on this space for more details. DIA has the heft to help the industry make this real.

Both Astellas and Janssen, Anthony Yanni and Katharine Caparella, respectively, broke down how they are leading efforts to help their companies to become more patient centered. They generously spoke about the progress and the hurdles they managed, are managing, as they drive their patient centricity efforts.

There was a collaborative COVID effort in the UK to better understand people’s information needs. Liz Clarke and Jane Leahy, both of Norgine, presented how an extraordinary collaboration that rapidly mobilized to help assess and help clear up confusion regarding information around COVID in the UK. The collaboration was made up of patient groups and industry. Due to their existing relationships, and with unprecedented speed, the collaboration was able to design, approve, and issue a survey that resulted in a report and webinar that you can find here.

GSK’s Jeannette Ryan presented the Transcelerate Patient Protocol Toolkit. From the Transacelerate website:

The Patient Experience Initiative developed tools to provide more effective ways to engage with patients in the design and execution of clinical studies. These tools aim to improve engagement and partnership between             biopharmaceutical companies and patients to create better experiences for clinical study participants.

The additional good news here is that you can attend the next conference in April, see below:

  • For the agenda for the EU-based January 25, 26, 2021 meeting click here
  • For the agenda for the US-based April 7-9, 2021 meeting click here

Whew! 2 days straight of being up at 4am and then full days on EST time – I am exhausted and exhilarated. And, I am sure that the Conference Forum team had to have put in may more hours than me. I applaud them for putting on a fantastic meeting. There is a comment form below. If you have additions or corrections please put them there for all to see. In my enthusiasm about this meeting my goal was to get something out quickly so you could be aware of the incredible value that Patients as Partners provides.

Just my thoughts,

Dyan Bryson




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