Working Together

In the 3rd and final wrap of the workshop we held at the NSW Patient Experience Symposium (#PExS2018), we cover what Anthony Brown, Executive Director of Health Consumers NSW (HCNSW) shared in his overview of HCNSW, their interest in research, and getting researchers and patients working together, based on the findings of the 2017 report co-produced by Research4Me and Health Consumers NSW: Involving Health Consumers in Health and Medical Research – Enablers and Challenges from a Consumer Perspective.

The key notes from Anthony’s presentation were:

  • Health Consumers NSW is the peak non-profit body representing Health Consumers in NSW.
  • The term “engagement” gets used in many different ways. For the purposes of this presentation, “engagement” means activities that involve health consumers (or communities) in health service decision-making, policy development, service delivery, evaluation and research.
  • The 2017 report resulted from a workshop in October 2016 that brought together health consumers who had been involved in research, not just clinical trials, but the broad spectrum from basic research to clinical research, to share their experiences.
  • We need to get away from tokenistic consumer involvement in research, such as bringing consumers into a research team merely to review a 100 word lay language summary, to more meaningful engagement.
  • There were 9 factors identified to impact consumer involvement in research, in no particular order:
    • the types of research being conducted. Some research lends itself better to input from consumers. Asking a consumer, for example, to input on methodological design of a basic (laboratory) research project is probably not as appropriate as asking a consumer to input on the patient outcomes that should be measured in social or clinical research.
    • the availability of consumers. Health consumers are not researchers and not available in the same way that paid staff are. They have day jobs, caring responsibilities, may not be well, may be undergoing treatments, etc that means they are not necessarily available in working hours. So scheduling of meetings, notice periods for input/review, can limit the extent to which consumers can be involved.
    • funding consumer involvement. Institutions and research teams looking to involve consumers need to make sure consumer involvement is properly resourced, ideally with money, but also in terms of time and structures to make it work. It’s not just about plonking someone on a committee, but about having the supports in place to help the consumers and researchers succeed in working together.
    • finding the ‘right’ consumer. There’s a need to match researchers with consumers that have the type of experience that is relevant to the research, not just any consumer. Before you start recruiting consumers, it is important to understand what you are recruiting them for. Researchers need to be matched with consumers that have the type of experience that is relevant to the research, not just any consumer
    • consumer training and support. Consumers need a basic understanding of research and what it does, and the expectations of them. They also need to be supported, for example, by having other consumer peers on a committee, or being appropriately briefed about the purpose of a meeting or project and what is expected from them in it.
    • research beliefs and culture. There can be a misunderstanding of what consumers are there for. Its not about advice on whether to use reagent a or b, but rather to incorporate the experience of the consumer in order to make the research more human.
    • researcher training. Just as consumers need training, researchers need support in knowing to get consumers involved, how to engage and communicate with them.
    • clarity about roles and responsibilities. Create something like a job description for the consumers, so there is clarity for both the consumers and the researchers about what they are there for, and what they are not. Ideally this should be
    • language. Being aware not only of scientific jargon, but also of what is spoken about and why. One consumer spoke of a research team she was involved in speaking about the prognosis for a condition she had, that she was unaware of (which was not a good prognosis). Researchers are not responsible for what doctors say, but are responsible for what they say. They need to show empathetic communication – being aware of the experiences of those in the room, and imagining what they may be.
  • The key enablers consumers felt were important were highlighted, but not discussed in detail as they are covered in the report. In summary, they included:
    • Being valued and listened to
    • Having support and training for consumers
    • Training researchers
    • Being involved throughout the research cycle
    • Involvement at all levels of research, across all levels of engagement (informing through to control)
    • Improving communication between researchers and consumers.
    • Use of technology as an enabler.
  • What can be done to advance consumer involvement? A few suggestions were discussed including:
    • Creating a consumer involvement logo or tick. Attendees were referred to the Consumers Included logo developed by Cancer Voices.
    • A need to get consumers more involved in the ethical review of projects, and perhaps educating ethics committees on the difference between involving consumers as participants vs advisors/partners in the research.
    • Better understanding the consumer experience of clinical trials. Anthony was particularly struck by the conversation by Lillian and Jill regarding the lack of feedback to trial participants. He noted that health services are starting to appreciate the need for this, but clearly more to be done in research.
    • Having institutions create standing panels of consumers to provide input.
    • Developing a guiding set of principles around what is important to consumers around being engaged in research. The October 2016 workshop attendees had specifically tasked HCNSW with achieving this, and HCNSW held a follow-up meeting in March 2017 to progress that. HCNSW are still working on the outcomes of that workshop.
  • Anthony invited people at the PExS2018 workshop to join their Health Consumers in Research Facebook group.

The full presentation can be viewed in the video below.

The original plan for the workshop was to include time for attendees to brainstorm in groups how various concerns raised by Jill, Lillian and Fabian about the experience of being involved in trials as participants and consumer representatives might be addressed.  The richness of the discussion and questions that arose from each of their presentations however meant that we ran out of time for brainstorming.

In the absence of discussion, participants were asked to leave behind any notes they had made on worksheets so that we could collate their individual thoughts. Eight attendees left their notes behind and for completeness, the issues and potential solutions they raised are summarised below (deidentified unless the notetaker requested identification).

  • Questions, Issues, Observations:
    • There is a need to address the concerns of patients worried about the side effects of drugs in research projects. Pharmaceutical companies sometimes don’t have a good name.
    • There’s limited access to trials and information on upcoming trials.
    • Participants not always told the name of the drug being tested, and if they got it in the trial. This can have implications for their post-trial care, if that drug is approved and they don’t know they had it, or whether they responded to it.
    • Finding the “right” consumer to be involved important.
    • There’s a need to make consumers feel ‘part of the team’ – that doesn’t always happen.
    • How can we design trials to make them more patient-centric, but also meet the needs of the sponsors?
    • There is a need to make sure carers and family are considered, not just patients/public.
    • General questions raised about trials: Are there any for those at risk of serious illness? Are trials for really unwell patients?
  • Solutions:
    • NPS Medicinewise may hold data that can help address the issue researchers have finding patients for trials, and improving GP referrals to trials.
    • Improve doctor awareness of clinical trials by incorporating trial information in their training and news communiques.
    • To improve patient-centricity in trials, consider involving patient advisory boards, contacting patient advocacy groups. Send protocols and documentation to such groups prior to approval.
    • Understand the triangle of care between clinicians, patients, and carers/family. Reference made to see the UK NHS framework.
    • Create a database for consenting consumers – Tony Finneran.
    • Those that add cost to NSW Health (such as gambling and alcohol providers) should provide research funding – Tony Finneran

Thanks to everyone that actively participated and engaged in this workshop, and for the speakers that so generously shared their experience.

Have you been a research participant or research consumer partner/representative? Please get in touch. We’d love to help you share your story.

If you are interesting in learning more about how you can get involved in medical research in a meaningful way and connecting with like minded-people, join our Research Gamechangers Facebook group and start asking questions, sharing research experiences and meeting and learning from others like you.


PExS2018 Part 1: Experiences Being In a Trial

PExS2018 Part 2: On Being a Patient Working with Researchers



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