By Barbara Wider and Terry Rohini, Nov. 25
Patient and Public Involvement and Engagement in research (PPIE), sometimes referred to as Public Participation Involvement and Engagement is defined as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them (NIHR).
Research funders throughout Europe and North America increasingly require evidence of PPIE activities and it is now widely accepted there is an ethical and moral obligation to ensure authentic PPIE activities can be demonstrated as a key aspect of evidence-based medicine and health care.
PPIE with CAM Cancer
In 2022 CAM Cancer began the process of exploring how their large database, including evidence summaries designed primarily for health professionals who support people living with cancer, could be made more accessible to patients and for anybody who wished to find out more about using CAM for cancer.
Initially, it was intended that “patient handouts” would be produced, where the evidence summaries would be “translated” into ways that would be readily understandable for a non-scientific audience. However, some important issues made this task more complex than initially anticipated and we were faced with three pertinent questions:
- What does “uncertain” or “inconclusive” evidence mean to patients?
- Is it sufficient to simply translate existing content into plain language?
- Will the summary outputs have a meaningful impact and benefit for the intended audience?
In order to gain a deeper understanding of these issues we engaged with people with lived experience of cancer. Using existing networks in three European countries, we spoke at length with people either living with cancer, who had cared for close relatives and individuals in remission from their cancer.
We also explored issues such as what was most important to non-health professional audiences, and where and what sort of information would be sought. We made extensive notes during these interviews and summarised these into learning points.
PPIE contributors’ views
Our findings from this exercise were at odds to what we were expecting and allowed us to rethink the needs of those accessing the CAM Cancer website.
- Trust and credibility
The concept of efficacy/effectiveness translates for patients and carers into credibility or trustworthiness of both the information and the CAM itself. This remains a complex issue. Contributors wanted assurance regarding the information source, and for the CAM itself, including some indications of how many studies have been conducted, what did they find, what were the effects. - Clarity and usability
The reader is a person who may be (very) unwell, and undergoing treatment, or may be a carer of a person needing significant level of care. In terms of access, straightforward content and navigation are key. - Symptom-based access
Accessing information according to specific symptoms (e.g. pain or fatigue) was more important than accessing information according to treatments. However, the option for additional links to supplementary information about treatments was also required. - Safety and risk transparency
Safety issues were very important to the reader and linked to the concept of creditability/trustworthiness.
The PPIE contributors also talked more widely about their attitude to using CAM. Knowledge of the information source was important for them, and they were wary of influences such as corporate recommendations that may have influenced trustworthiness of the CAM. One contributor suggested amazon style reviews from people like themselves who had used the CAM may help to assure them of trustworthiness/creditability.
- Mechanisms and interactions
In terms of CAM treatments, the PPIE contributors alluded to wanting to understand the “mechanism of action” and “interactions” of the particular CAM intervention they were interested in using (including if there were reasons why it could not help, e.g. due to other medications blocking these action). - Pragmatic decision-making
In making decisions regarding use of CAM, our contributors felt that they would weigh up the pros and cons of whether or not to try it, based on their personal perception of safety and preferences (cost, lifestyle, etc). For some supportive treatments, efficacy was considered to be less important, e.g., massage, but information about good practitioners (qualifications, regulatory bodies etc), what it could be used for, what is it etc, would be welcomed. - There was a knowledge that these would not support the cancer itself, rather the treatment could help maintain dignity and ability to continue to have some quality of life.
Using PPIE for website development
We used the contributors' input regarding straightforward content and navigation as a starting point for developing patient summaries. The revised content includes:
- An A–Z symptom index ranging from anxiety to wellbeing, offering brief and concise summaries as well as links to further information.
- To enhance credibility and trustworthiness, the main findings and the body of evidence are summarized.
- Evidence-based categorisation of treatments by their reported effects, e.g. positive, contradictory, or no effects.
- Bullet-pointed summaries of key findings to enhance comprehension and transparency
- Clear safety statements addressing known risks or interactions.
- Direct links to full evidence summaries and methodological approaches.
Reflections on the PPIE process
Our initial interviews led us to review our conceptualisation of what was important for patients and for their carers:
- Reflection on assumptions
The gap between what we assumed patients require and what they reported as important and meaningful for to them was highlighted in these PPI activities. - Beyond “education”
Our aim is not «educating», people but to engage and communicate in a way that is accessible and useable for anyone who wishes to use the information we provide. - Communication remains a challenge
Communicating research remains difficult, and ongoing PPIE is essential to help us to do this in a meaningful and impactful way.
Conclusion and outlook
This work has highlighted the value of PPIE in the development and dissemination of evidence-based resources on CAM in cancer care. Our engagement with individuals affected by cancer revealed important insights that challenged initial assumptions and reshaped our approach to communication—particularly around trust, safety, and accessibility of information.
Rather than just simplifying scientific language, we redeveloped the information focusing on trust, usability, easy navigation, and contextual relevance—key factors that underpin informed, patient-centred decision-making. Their input helped us move beyond a top-down dissemination model toward a user-centred design, better aligned with their needs.
This project has shown us that CAM Cancer activities should be underpinned by authentic and inclusive PPIE activities. Our understanding of PPIE is evolving and not static. We constantly need to strive to engage with our stakeholders in relevant and meaningful ways to improve the way we communicate, engage with and disseminate scientific evidence in practice.
Looking ahead, we will continue to explore how PPIE can ensure the CAM Cancer resource aligns with the needs of those it aims to support.
