Welcome.
Welcome to our Digital Scrapbook. Here you will find a collection of resources, examples and links to things discussed during the symposium.
Contents
- Why we need to communicate trials results to different audiences: a patient's view.
- Communicating results to... Trial Participants
- Communicating results to... The Wider Patient Community
- Communicating results to... The Clinical Community
- Communicating results to... Policy Makers & Guideline Developers
- General Guidance
Communicating to...
Health Research Authority (HRA) Guidance
This guidance sets out how and what information should be supplied to participants, and their legal representatives, consultees, close relatives or close friends (where applicable), at the end of a study.
Multi Regional Clinical Trials (MRCT) Center Return of Aggregate Results to Participants Guidance Document
The MRCT Center undertook this project to provide guidance on how to share results with trial participants. This guidance was developed in collaboration with regulators, industry partners and patients.
Case Study: PROMIS Study Results
The results of the PROMIS study, looking at whether MRI scans could improve prostate cancer diagnosis, were published in The Lancet. The PROMIS study found that using an MRI scan to decide which men need a prostate biopsy allows doctors to identify around a quarter of men who can safely avoid the painful procedure. Read more here.
The graphic below was used as part of the participant summary of results.
Using Infographics to Communicate Results
Here are some examples of infographics the MRC CTU at UCL has developed for other studies.
Trial Participants - Parallel Session Feedback
- Communicating results works as a reminder that trials need more Patient & Public Involvement. Having patients in the room, consulting on the design, conduct, and dissemination will help to communicate the right message in the right way.
- Communicating to trial participants requires both time and resources. It is important to raise awareness of this, and make communication a standard part of the trial design.
- Communication of results to participants should be considered right from the trial outset. One option could be to incorporate an opt-in into the patient consent form asking whether they would like to know the results of the trial.
Communicating to...
Case Study: STAMPEDE Trial Results
Two papers published in 2015 showed that having early chemotherapy improves survival for men with prostate cancer. The papers reported the results from the STAMPEDE trial and a meta-analysis.
Both papers looked at the use of a chemotherapy drug called docetaxel. Docetaxel is already used for men with prostate cancer once hormone therapy has stopped working. In STAMPEDE and the meta-analysis, the researchers looked at using it earlier, when men are starting long-term hormone therapy. Both studies found that adding docetaxel improved survival for these men. Read more here.
The researchers used a variety of different approaches to communicating the results to patients, including:
- Films
- Infographic
- Articles in patient newsletters
- A series of roadshows for patients around the country
- Twitter Q&A
Giving the drug abiraterone alongside standard hormone therapy improves the survival of men with high-risk or advanced prostate cancer, according to results from the STAMPEDE trial, published in the New England Journal of Medicine on 3 June 2017.
Beating Prostate Cancer Roadshow
Cancer Research UK and the MRC CTU at UCL hosted a series of free events around the UK for men affected by prostate cancer and their loved ones.
The events provided an opportunity to hear from experts in the field and gain insight into the research improving the way the disease is treated.
A patient who attended the Roadshow wrote about it on his blog:
Twitter Q&A
On Wednesday 1 November 2017, we ran a Twitter Q&A session about the STAMPEDE trial - with the hashtag #BeatProstateCancer. You can catch up on it here.
Case Study: MS Society
The MS Society funds research and support for those affected by multiple sclerosis.
Some examples of communicating with the wider patient community discussed were communicating a trial launch to manage patients' expectations and providing comment to ensure balanced coverage.
Cancer Research UK (CRUK) Trials Database
The CRUK clinical trials database has information about UK clinical trials and summaries of trial results.
Wider Patient Community - Parallel Session Feedback
- Communication is not confined to a particular audience anymore - information targeted at a particular audience often ends up in the hands of a much wider, more varied audience.
- Partnerships between researchers and charities / patient groups are key.
- Communication needs to start before the trial has launched, and then it needs to happen regularly and clearly.
Communicating to...
Case Study: The ARREST Trial
The ARREST Trial looked at whether or not giving an extra antibiotic, rifampicin, in addition to the standard antibiotic treatment, would help sick people with Staphylococcus aureus blood infections. Read more here.
The researchers used a variety of different approaches to communicating the results to the clinical community, including piloting the use of podcasts and an animated abstract.
Case Study: i-Base
HIV i-Base is a treatment activist group. They are committed to providing timely and up to date information about HIV treatment to HIV positive people and to health care professionals.
Some key points for researchers looking to communicate results
- Take time to plan your communication
- Start planning early - don't leave it to the last minute
- Include the community of interest, and use them to leverage your communication
Clinical Community - Parallel Session Feedback
- Talking in clear language / 'Plain English' is still important for clinicians
- Clinicians are under significant time pressure - trial results need to be made as available as possible
- Use multiple alternative mediums to disseminate results - e.g. podcasts, infographics, videos, websites
- Use community groups to feedback information to the clinical community - reinforce information sharing
- Be aware of the significant time gap between the trial results and changes in clinical practice - effective communication could help to shorten the lead time
Communicating to...
Case Study: PROUD
PROUD was a pilot study to determine the feasibility of a larger trial assessing the clinical and cost-effectiveness of including anti-retroviral pre-exposure prophylaxis (PrEP) in the HIV risk reduction package for men who have sex with men who are at risk of acquiring HIV in the UK.
Case Study: Prostate Cancer UK (PCUK)
Prostate Cancer UK has a simple ambition - to stop men dying from prostate cancer. Through shifting the science over the next 10 years to focus on radical improvements in diagnosis, treatment, prevention, and support, they will stop prostate cancer being a killer.
Karen Stalbow talked about how PCUK have been working to change clinical practice and guidelines based on the result of the PROMIS study.
Policy Makers & Guideline Developers - Parallel Session Feedback
- Resources are a challenge - Time, money and expertise are important.
- Rare diseases are a challenge - Smaller patient populations, smaller trials, and potentially less convincing clinical evidence
- Collaboration is important for influence - Researchers, patients, patient groups, clinicians, charities; all stakeholders have an important role to play.
- Everyone must work together early in the process to understand differences in objectives and opinions; it is important to reach consensus, and work together towards a common goal.
- Expert clinical voices are important, especially those with wide public exposure.
General Guidance
Other Useful Resources
Communications Handbook for Clinical Trials
Good participatory practice - Guidelines for biomedical HIV prevention trials
Research to Action website - The Global Guide to Research Impact
ODI - Communications monitoring, evaluating and learning toolkit
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Credits:
Created with images by Dustin Lee - "taking a picture of hanging lights" • rawpixel - "achievement agreement business"