Earlier this year, PFMD launched the first edition of the Book of Good Practices in patient engagement. The unique book details a first wave of dynamic and innovative working examples illustrating the Patient Engagement Quality Guidance. Aiming to provide inspiration and practical examples for everyone interested in delivering patient engagement initiatives, the Book of Good Practices is based on a strong selection and assessment methodology, designed and delivered by our co-creation team and a network of collaborators.

The Book of Good Practices continues to grow. Anne-Marie Hamoir, a consultant at PFMD and a a central figure in the development of this unique guide, emphasises that the first edition is just that – a first step. The hope is that the Book will evolve to be a comprehensive document outlining many many examples of good practices within the field of patient engagement.

Hamoir explains how it all started. “The priority that we had at the end of 2016 was to show to the world what is good patient engagement. At the time, the people struggle to have a definition of patient engagement. People wanted to see real examples they were really lost in all that discussion, and they wanted to come to  the reality of concrete things, so there was a need to have more guidance and structure, what we have, what we should do, what is coming first, what is coming next,” she explains.

Synapse was an ideal resource, Hamoir says. “Synapse was growing – people were posting their work and how they did it. We did quite exhaustive works to check and review all the individual examples and established a number of criteria to extract those who at the time were looking to be the most promising,” she explains.

The richness of the description was what appealed to the team seeking the best examples of good practice. “it may look a little bit subjective but you always have more confidence when you see people who are explaining it in details rather that if you have something very minimalistic, and so we had this criteria that we wanted something well-explained and rich in detail.”

The other aspect was regarding the number of stakeholders involved in the initiative – PFMD idealises a multi stakeholder approach. “Ultimately patient engagement is something you do together, you do it with patient groups must include other but most of the time you involve other stakeholder groups. So it can be patient association with industry, with regulators or with technology assessment agencies, or whatever it is, but it needs to be a minimum of two stakeholder groups involved.”

These two criteria allowed the team to conduct a very exhaustive screening of the various initiatives contained within Synapse. They then reached out to each selected initiative to explore if they were interested in collaborating on The Book of Good Practices.  From an original panel of 40 initiatives identified in the beginning, a total of 20 were keen to take part. Using the Patient Engagement Quality Guidance, a shortlist of eight was created.

“These examples have been selected for the first wave of the Book of Good Practice and at the end we only had eight because the others for whatever reasons did not bring us enough evidence that they are exemplifying the quality criteria that we established,” explains Hamoir.

She reiterates that this is simply the first wave, so the team hopes to collect many more initiatives for inclusion in the book. “The challenge will now be to collect more cases, but still remain very methodology-focused in that approach. We want to put the bar very high, we want to see examples where the quality criteria is being exemplified.”

The next step is to integrate the Book of Good Practice with SYNAPSE; when people apply to SYNAPSE they can automatically consider the seven criteria for inclusion in the Book from the beginning. 

Hamoir is also keen to stress that PFMD is working in a non-competitive space. “We want companies to know there is no risk if they want to join this exercise, as there is no chance of sensitive data to be  distributed somewhere else.”

Meanwhile, the team continues to hunt for the very best examples of good practice in patient engagement. The process is robust, says Hamoir:

“Where we are very strong is, we involve multiple stakeholders, people coming from different perspective, senior, or less senior people, people in the operations side, people in the more strategic side. That brings the robustness to what we deliver, because everybody brings their own perspective and ultimately the selection reflects the plurality of the approach. That makes it quite unique.”

The selection process for the second Edition of the Book of Good Practice is currently ongoing, with the second edition expected to be published by January 2019.