PIPHealth: Giving patients a voice through research

The Netherlands-born Nadine van Dongen started her company, Patient Intelligence Panel (PIPHealth), in 2008. She has a background in the pharmaceutical industry, working in the marketing and market access departments, a line of work she very much enjoyed. In thinking of the pharmaceutical industry’s bigger picture, Nadine has often wondered why there has been a large focus on communication with doctors, but not as much about communicating with the patients. 

Then she herself became a patient due to an unfortunate car crash in 2005. Her car flew through the air and bounced three times. She was extremely lucky in that there was an empty ambulance passing by at that time going in the opposite direction and saw the whole thing occur. They were able to quickly assist her but her road to recovery was long. She was in a coma for a few weeks, suffered a broken neck, and had extensive nerve related pains, not to mention that she needed to learn to walk all over again. 

The experience removed her from being immersed in the pharmaceutical world for enough time to have her reflect on her situation as a patient and to recognize that it is not just important for the pharmaceutical industry to understand patients, but there should be a bridge by which patients understand the industry better too. 

The car crash fueled Nadine with a passion to use her luck in surviving to make a difference, so she moved to London and began her attempts to appeal to the pharmaceutical industry with her new-found perspective. However, what she kept running into was the hyper-focus on doctors, and she could not get her point across thinking holistically. This prompted her to step away from the industry and join an online research company. 

Within a matter of days, she was able to gather a lot of consumer feedback (from thousands of people) largely from current or former patients and it made her realize that patients want to be heard with regards to the information they can provide as well. At that point, things started to really come together for Nadine. This prompted her to start her own patient intelligence-based company, in 2018, with a focus on trying to communicate patient needs, opinions, concerns, and beliefs to pharmaceutical companies and engage both sides in being partners in care.

She was able to bring together some investors and grow the company bigger. She was able to create a vehicle for driving the message through patients’ thoughts on various matters. People could sign up to be part of this patients’ intelligence movement through www.piphealth.com and participate in research studies that would help promote quality of life and the education of the patient-side view of their treatments and experiences. She believes that this kind of interaction is not only healthy from a research perspective, it can get patients to help themselves and each other. 

Additionally, her company would work with communication agencies and other intermediaries who can help better solidify communication and knowledge sharing between patients and pharmaceutical companies. She sees that since the start of her company, patient engagement has come a long way in terms of a patient-centric approach. As they work with patients to provide valuable information, they get their patient knowledge through surveys or online assignments. In return, they donate money to charity on behalf of the participating members of the study, and in doing so they add to the valuable scientific knowledge base for the future of patient care.

Nadine points out that the company’s research is not just market based, but also entrenched in the academic aspect. They are trying to get more papers published, working on a patient segmentation tone which assesses the behaviors of the cared for and the caregivers and assures that everyone with a particular condition is treated fairly and similarly. Their efforts are also focused on a patient’s psychology and developing tools to better support patients throughout their treatment process. Nadine herself is working on getting a PhD at King’s College in London.

In terms of her company, Nadine says that the goal of PIPHealth has always been to more closely align the actions of pharmaceuticals with the patient’s expectations to improve patient treatments and lives. They are constantly working to bridge the gap between pharmaceutical and patient relationships. The pharmaceutical side thinks of things in very scientific terms, while patients need more clear and pragmatic explanations. Helping the pharmaceutical side ease the patients’ understanding of their treatments can result in better adherence to the expectations, which in turn promotes better outcomes for the treatments themselves. There are almost always barriers between the two sides being able to communicate, and PIPHealth serves as the intermediary between the two for over a decade now. 

Nadine doesn’t believe that you can purely be patient-centric if you are working with a commercial company. And it is in fact, technically not possible to achieve a 100% patient-centric approach. When the medications being made are very expensive, they cannot be accessed by a majority of patients, and by definition that is not a patient-centered approach as prohibitive costs do not put the patient at the forefront of the mission. She believes though that patients, as the consumers from the companies, are interested to know where the massive amount of money goes, and while it’s a hard conversation, it’s a topic that does need to also be communicated about, and her company helps to promote such information sharing, so it is commercial-centric as much as it is patient-centric. She supports both ways of communication as it means that there is more awareness, and that is never a negative.

The evolution of how people get educated about any type of information has been greatly enhanced by the internet and the knowledge gap barriers have been greatly reduced. However, the focus should not always be about the information itself but how the patients receive it, and a lot of that depends on their personality and behaviors. She thinks that there is a segment of the patient population who is proactive about their treatment and more accepting of their conditions. But there is also a portion that is passive or resistant to acceptance of some of their health-related issues. So, when PIPHealth performs their research, they aim to poll different types of personalities for a more encompassing and more natural study findings.

The company’s goal was to give patients a voice that speaks to all patients, no matter their view or approach to their health. Their website allows for any patient to come in and sign up, then share their views. It welcomes people who are caring for someone with a condition as well such as the elderly with Alzheimer’s for instance or a sick child. They collect this information, from patients from all walks of life and spanning about 140 different diseases. With such a wide array of information, patients with questions can come to them and be able to find out more information about almost any area of health, no matter how unique. When less is known about a particular disease, they can reach out through recruitment channels and provide better areas of understanding to address some of the concerns of patients who may be contacting them with more isolated cases.

Nadine notes that while the coronavirus pandemic has been a tragic and tough situation for the world, what it positively affected was the reawakening of some people’s attitudes, including those who work for pharmaceutical companies. Many had fallen into a bit of a lull of just doing their jobs, but the pandemic has reawakened the urge they had to do something good to help humanity, resulting in a much more driven, fresh approach to their work. She believes that this is an important positive brought upon by the horrific state of the world, as it promotes the support of patients and a deeper dive into insights that could help humanity even more in the long run.

Nadine adds that in terms of patient-centricity, she is now more engaged with her pharmaceutical clients to be involved in a more systemic patient engagement. This type of approach will help to promote newly reinvigorated patient care as communication between patients and the pharmaceutical end will integrate into better-suited campaigns and business plans for up and coming pharmaceutical ventures. 

Twitter: @piphealth

Facebook: @PIPhealth

Instagram: pip_health

Linkedin: nadine.vandongen

Email: nadine@piphealth.com

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