Identifying the information needs of patients and healthcare professionals (HCPs) when using medicines is vital to ensuring patients have optimum health outcomes. A new PFMD How-to Module aims to do just that, explains Meghna Joshi-von Heyden

Patient engagement in the drug development process does not come to a screeching halt when the medicine eventually reaches the market.

The post-marketing phase is critical, as this is where patients are supported to use their medicines effectively and safely, and is probably one of the stages where pharma feels most comfortable working closely with patients. 

But there is always room for improvement. As a contributor to the PFMD working group drawing up the How-To module for Patient Engagement in the Post-marketing Phase, pharmacist Meghna Joshi-von Heyden says she was enthused to be involved in developing good practice tools and standards in patient engagement and sharing these across the pharma industry. 

“As a healthcare professional it’s brilliant to see pharma taking an increasingly active role in ensuring that medicines development meets the wider needs of their patients,” she says. Joshi-von Heyden notes that in many health systems, pharmacists are often the most accessible health professionals for patients seeking more information about their medicines. “The work is therefore very close to my professional values.”

Her diverse background in health spans experience in grassroots pharmacy providing direct patient care, through to implementing national policy programmes that improve professional practice and how health services are delivered. Her unique experience gave her a valuable dual perspective on the development of the module.

“Post-marketing was a natural fit for me as this is where my experience and passion lies – supporting patients in using their medicines effectively and best managing their health,” she says. “Over the course of my career, I have seen how fundamental access to quality information and data is. For patients and their carers, of all ages and in different stages of care, quality information really helps to overcome some of the challenges of taking medicines. Health professionals want to share the right information to support their patients, at the point of care.”

One of the initiatives the How-To module will focus on is that of the Patient Information Leaflet (PIL). A readily available source of quality information for every patient taking medication globally, it is often overlooked; Joshi-von Heyden says the working group wanted to understand why this is the case. It has been well-documented that access to quality information helps improve health literacy – in itself a UN Sustainable Development Goal – and is a key driver worldwide in helping patients manage their care and navigate health systems. Joshi-von Heyden worked on the proposal to the group on engaging patients in PIL development and deciding what kind of information patients would really like to see in a PIL.

“We’re taking the opportunity to really look at identifying the information needs of patients and HCPs when using medicines. Putting patients and their user needs first is vitally important in understanding and improving their experience of healthcare and ultimately their health outcomes,” she states.

As PFMD is global, the group is able to build on a recent report from the European Medicines Agency around improving product information for EU countries and co-create with patients worldwide to meet their needs. Joshi-von Heyden says the group has taken the concept of engaging patients in the development of PIL to the next level. “Over the next few months, we will be surveying both patients and healthcare professionals, globally, to get their feedback on how they use patient information leaflets. The expectation is that these needs may be different from country to country, and continent to continent.”

It is hoped that the survey insights will aid in the co-creation of tools that increase patient involvement in the development of patient information leaflets, she explains. “We can then promote best examples and recommend formats and avenues for dissemination, including other considerations such as signposting, language etc…  ultimately with the aim of improving health literacy and access to information regarding medicines.”

Given the strategic role of PFMD, the global implementation of the How-To modules has the potential to have a real and tangible impact on patient engagement, according to Joshi-von Heyden. For now, the work continues and she is enthusiastic about her experience so far.

“It has been really positive and energising. I’m really excited about the work currently in development, as the group is a great mix of patient advocates, industry experts and health professionals, with everyone bringing their unique perspectives and stories to the table. The PFMD team has been really dynamic in bringing everyone together and driving the project forwards, despite the current circumstances.This is the beginning of the journey and together in collaboration, we can really make a difference.”