With a background in nursing, Kate Holliday, CEO of the Centre for Community-Driven Research (CCDR), recognised the significance of the patient experience in driving research and making healthcare decisions. This motivated her to establish the CCDR where patient engagement is at the heart of everything they do
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How new is the patient engagement role in your organisation, how has it evolved and what are your hopes for the role in the future?
The Centre for Community-Driven Research, or CCDR, was established in 2012 and patient engagement is all that we do, so for us, it’s not new. We really focus on testing new approaches to systematic community engagement and over the last decade in particular, I’ve seen a lot more organisations establish patient engagement roles.
The practice of patient engagement itself is a challenge and it’s sometimes hard to measure the evolution. In the future, I’d like to see a few things evolve. I’d like to see a shift away from the ‘patient story’ and more towards acknowledging patient experience as evidence. This however needs to be done systematically rather than anecdotally and for this there needs to be a move towards sustainability and developing the infrastructure for community engagement within health systems. We often talk about infrastructure for other parts of the health system, but if we are serious about patient engagement, we need to think about what structures and funding mechanisms are needed so that we can engage patients in an independent way and ensure that we maintain bottom-up approaches.
Another is to acknowledge patient organisations as part of the health system. They are such an important part of any health system and community-based care. The stronger patient organisations are, the stronger health systems can be. There is also an area that I’m really passionate about and that’s the role of nurses in decision-making. If we look at health technology assessment as an example, nurses aren’t really engaged in the process yet often are the health professional that patients spend most time with and in a strong position to advocate on behalf of patients.
What does a typical week entail for you, and are there any specific projects you can tell us about?
There are a few parts to my role, I’m a Genetic, Rare and Complex Conditions Telehealth nurse which is part of a pilot project we are running called ‘Patient Pathways’. I’m also a researcher and I think in rare and genetic conditions, you need to have that skill set because so much of the information available sits within medical journals. I spend a lot of time after the consultation preparing information sheets for patients because there often isn’t anything for them in everyday language.
The research side of my role is within our Personal Experience, Expectations and Knowledge program, or PEEK. We developed a protocol over a couple of years to really be able to understand the experience of patients in the health system and to build a repository of holistic evidence. It’s an online questionnaire and a structured telephone interview, and the interview itself can be quite therapeutic for patients as it gives them a chance to talk through everything they’ve been through with one of our research nurses. We are building a repository of patient experience reports and these are all publicly available. Our reports are often used in the context of health technology assessment as the ‘third pillar’ of evidence alongside the clinical and economic data. At the moment we are also looking at ways, particularly in the rare disease space, to transform the results of PEEK studies into patient information and have a pilot project coming through in neuromyelitis optica spectrum disorder. The third part of my role is network development. We run the National Patient Organisation program where we are building networks across the 18 countries that we work in. We’ve started in Australia where we have the largest network of patient organisations in the country. The aim of this program is to position networks as the professional body for patient organisations within each country. Patient organisations are an important part of any health system, so the aim is to build capacity within our part of the sector and give patient organisations a place to test and develop systems and processes that work for them and the patients they represent. Within the Australian Patient Organisation Network, we are opening a new service to rare and genetic disease organisations to offer support. Essentially, they can identify the help they need, for example research support to develop evidence-based materials or to review their existing materials, telehealth nurse support for patients, governance or organisational support, and so on.
What were your personal motivations to taking up a role in patient engagement?
I started CCDR because as a nurse and throughout my career I kept seeing a big gap between what patients were talking about, and how decisions – at many levels – were made. The real needs and concerns of patients just didn’t seem to be getting through and there was no mechanism for that. I also knew that whatever process was put in place needed to be systematic and equitable so that any patient would be able to talk about their experience in a supportive environment and at a time that suits them.
It’s not easy to start up a charity and there is a lot of stress and personal sacrifice that come with that. I think that’s important for people to remember when they are working with charities, it can be easy to see the success and not the hardship behind the scenes.
What makes the role of patient engagement officer important to your organisation?
Everyone in the organisation is a patient engagement officer, it’s part of everyone’s role. There isn’t a day when each and every staff member doesn’t hear directly from a patient about their experience. It’s literally all that we do and probably also why we’ve built so much expertise in the field of patient engagement.
In your role, how do you ensure the patient voice remains central?
My role has really been to convince others that the patient experience is important and when collected in the right way, should be seen as evidence. That isn’t an easy thing to do but the way we do it is through leading by example. We have a ‘no white paper’ policy and that’s not because they aren’t useful, it’s just because our particular approach is to get in there, test approaches and implement change, rather than writing about what should happen.
How do you reconcile operational business needs with elevating the patient voice?
For me it’s a clear line. If the work we are doing isn’t genuine or independent, we simply don’t do it. Sometimes that doesn’t align with business or funding needs, but at the same time, if we can’t remain independent and protect the integrity of a patient’s experience, then we shouldn’t be doing it anyway.
What are the most rewarding aspects of your role?
The most rewarding aspect is being able to build something that is really genuine and also working in community-based care, providing linkage between hospitals and clinics, to communities, and exploring what is possible in community-based care and community-based research.
What is your proudest moment in your career thus far?
I know that the answer I should give is that CCDR started in Australia and in 2018, a proud moment was when we opened offices in Switzerland and the UK and then this year, commenced operations in 18 countries. Navigating the business side of things and establishing operations in different jurisdictions isn’t easy and while it’s something I’m proud of, the proudest moments are really just when I hear a patient say to me or one of my colleagues, ‘I feel so much better having spoken to you. I really feel like I’ve been heard’, whether that’s in the context of telehealth or the PEEK studies.
In 2020 I was listed on the 100+ Outstanding Women Nurse and Midwife Leaders by Women in Global Health, World Health Organisation, International Council of Nurses and partners. That was definitely a career highlight and particularly special given it was 2020 with so many deserving nurses.
What advice would you give someone considering working in the rare disease space?
I think one of the hardest parts of working in rare disease is that we all work in health systems that are population-based. If you are working in rare disease, it tends to be the complete opposite. Solutions aren’t always going to be perfect, but they are possible. You just need to be a bit more creative in rare disease, look for the commonalities where you can and take the wins when they come.
If you weren’t Patient Engagement Officer of CCDR, what was Plan B? What did your 10-year-old self want to do as a job?
After seeing the care that nurses gave various members of my family and having an older sister as a nurse, I went into nursing, but I grew up on a farm and wanted to be a vet when I was younger. It’s not a plan B, but I see having an animal rescue farm in our family’s future.
To find out more about the work of the CCDR, please visit; www.cc-dr.org