Why I joined PiPPi as a patient representative

Photo of Jenny C.

“For any true transformational change of healthcare driven by joint innovation, patients must be listened to fully as equal stakeholders.” 

Jenny C. is one of the patient representatives contributing to the creation of the PiPPi Community of Practice, as a member of the Patient and Citizen Advisory Group.

Can you briefly describe and present yourself and your experience?

My name is Jenny C., I am English and Greek living in the UK. I was diagnosed with a connective tissue genetic condition in my early 30s that has resulted in being a service user across several different specialities and I also have POTS, Postural Orthostatic Tachycardia which is a form of dysautonomia. 

I am an independent patient advocate involved in several areas as well as at the European Academy of Neurology WG on autonomic nervous system disorders. I am an alumni of EURORDIS, the voice of rare disease patients in Europe and a 2021 EUPATI, European Patient’s Academy Fellow Patient Expert. I am currently considering PhD options, working part time in my local medical school in knowledge exchange and actively seeking opportunities to foster closer collaboration between tech projects, industry and patients.

What do you want to achieve as part of the PiPPi Patient and Citizen Advisory Group?

My role as a patient advisor is to help PiPPi deliver more patient centric work as part of the overall PiPPi framework to ensure the creation of opportunities to build better care with patients as equal stakeholders in the process. Innovation procurement has the potential to create better patient care, increase efficiency, bring a range of economic wealth opportunity as well as enhanced access for patients.

What are your thoughts regarding the importance of involving citizens and patients in identifying unmet needs in healthcare services and in procurement processes? 

Patients and citizens have an integral part to play in helping clinicians, hospital management, academia and industry stakeholders better align what matters to them in an ideal situation. The scope of PiPPi is to ensure better practice standards and knowledge transfer in an area that is forever evolving. Given the speed of MedTech and potential for AI enabled care there is a need to ensure that all the bits of the jigsaw puzzle fit together in a seamless way.

The practice of medicine evolves continuously and the demands on hospitals do too, social determinants and community-based approaches need to sit alongside technology with greater integration.

Patients want to have their voices and concerns heard in a way that has meaningful results.

Jenny C.

For any true transformational change and collaboration that has the potential to develop solutions jointly, patients must be listened to fully as equal stakeholders and there has to be a metric driven way of measuring the impact of this patient engagement.

Patients want to have their voice and concerns heard in a way that has meaningful results for them and I believe it is through the process of innovation and the types of activities that PiPPi supports that progress.

What are your motivations to be involved as a member of the PiPPi Patient and Citizen Advisory Group?

It was really down to the fact that I am a passionate believer in the potential of technology enabled care to create better outcomes for more effective care that creates impact both for the patient and his or her family that can actually be measured in a way that makes sense not just for the research funders but also can provide adequate return of investment for both funders and patients.

I am a big believer in avoiding duplication of research and creating innovation that is both scalable, commercially fundable, investable and patentable and creating efficiency gains in a way that makes commercial sense but also patient centricity in a way that can not only be measured but is also really meaningful to the end user! 

My experience of care has to date been fragmented due to both the lack of interoperable technology at the time but also lack of commissioning, dysautonomia is complex and niche as an area and having a connective tissue disease too can also complicate matters even more. 

What are your expectations from PiPPi?

My expectations are first and foremost to learn from my fellow partner patient peers and from the rest of the consortia partners and see how to create knowledge exchange in international context that can perhaps learn from some of the practices adopted in other settings and countries to create a repository of best practice and figure out practical ways to help implementation of it that doesn’t look focus on patient and unmet clinical needs. 

What would you like the PiPPi project achieve?

The PIPPI has the potential to both raise awareness and educate the general public around modern innovation and technology procurement as a whole but also address some of the more common concerns around AI and privacy raised in the media as a result of recent news stories.

What would you not like PiPPi to become?

A bureaucratic project where patient perspectives and public involvement are undertaken in a tokenistic manner without effective evaluation, reporting, measurement tools and where the same thing is done over and again….if the science and medicine and technology are “sexy” shouldn’t the patient engagement be too?

Jenny C., member of the PiPPi Patient and Citizen Advisory Group
If you would like to get in touch, you will find me on LinkedIn or Twitter