To mark World Cancer Day, patient advocate Richard Stephens has shared his experience about the importance of incorporating good public involvement in cancer research.
The blog post has been published on the Health Research Authority (HRA) website here and details Richard’s journey first as a clinical trial participant to his role as a patient advocate. He has worked on patient advisory groups and various committees to help improve the information given to participants so they can fully understand the implications of their involvement in clinical research.
‘My first trial involved testing a new chemotherapy drug against standard treatment. I asked to be “randomised” to the new drug. I hadn’t understood what was meant by ‘randomised’ trial. My consultant told me later that she thought I had been joking when I’d asked for the new drug. But the randomisation did put me on it anyway, which was what I thought I’d consented to….
My own misunderstanding made me wonder why patients weren’t involved in writing the information that would be given to other patients.‘
There is guidance published on ‘PPI’ (Patient and Public Involvement) here on the Clinical Governance blog which incorporates guidance available from the HRA website and the National Institute for Health Research’s site.
Conducting PPI is a good way to seek the opinions and recommendations of the public, and can help to ensure that your study is designed and set-up in a way that will be relevant to participants, and of good quality. PPI can also help to avoid any setbacks once the project is underway.
‘Every year more patients are taking part in clinical trials. Evidence shows that cancer patients who take part in clinical research are more likely to report higher levels of satisfaction with their overall care, and are more likely to have better outcomes in research-rich hospitals, even if they don’t take part in trials themselves.
Research participation is good for patients, patient involvement is good for research, and good research produces better treatments and care for all of us.’
Remember that support is on offer at BU if you are thinking of introducing your research ideas into the NHS – email the Research Ethics mailbox, and take a look at the Clinical Governance blog.
You may have seen the blog post back in April regarding the results from a recent patient research experience survey, conducted by National Institute for Health Research (NIHR) Clinical Research Network (CRN) Wessex.
The survey results showed that across the 10 NHS organisations in Wessex, from the 400 responses received, 96% of participants had a good experience of taking part in research. It also showed that 98% of research participants surveyed had all the information that they needed in relation to the study.
The NIHR have released a recent report that shares the results of the Research Participant Experience Survey 2018-19, which was also conducted across the other 14 Clinical Research Network areas in England. You can take a look at the report here.
The National Institute for Health Research (NIHR) Clinical Research Network (CRN) Wessex has recently conducted a survey, distributed amongst the 10 NHS organisations in the Wessex region. This is the second time the CRN Wessex patient research experience survey (PRES) has been conducted, and ran throughout October 2018.
400 responses were received anonymously, and showed that 96% of participants had a good experience of taking part in research. It also showed that 98% of research participants surveyed had all the information that they needed in relation to the study.
Copied from the original article –
‘Many of those surveyed reported that the research staff supporting them were friendly and helpful and that they had a considerable amount of time to spend with them in order to explain the study and answer any questions.
The survey also highlighted that one of the key motivators for taking part in research was a desire to help others, with one participant commenting: “It’s good to know that this research could help future generations of patients.”’
The survey will be conducted again in October of this year.
Remember, there are members of the BU Clinical Research Unit team available during the Faculty of Health and Social Sciences Writing Week to help you (you don’t need to be FHSS to speak to us, we’re here to help anyone doing health research) along the way. Today we’ll focus on Helen Allen.
Once you have decided on a funder, an important (but sometimes overlooked) aspect of working up a grant application is the planning and documenting of the involvement of service users/patients/relevant groups or organisations (Public Patient Involvement or PPI) ie the people most likely to have a vested interest in the research you are intending to do. Indeed, many major national funders, including the NIHR, require detailed evidence of how service users have been involved. But do you know who to approach? When? How? What can service users be involved with? What can they add? Sometimes it’s relatively straightforward to identify appropriate individuals and organisations. Other occasions can call for more creativity. Hot tip: everything takes longer to arrange than you might think. Allow a minimum of 6 weeks to plan, consult service users and feedback from the PPI consultation to your colleagues.
If you’d like some advice about planning PPI and conducting service user consultations for a project Helen Allen will be pleased to advise you. Helen is available on Tuesday 3rd and Thursday 5th January.