How can research be made accessible and meaningful to patients, carers and lay people? The RCP’s Patient and Carer Network (PCN) outlines what exactly research participation means and why it’s so important, and the common pitfalls that make access and participation in clinical research difficult for patients and carers.
Following discussions with the BMA's Patient Liaison Group, our top five tips for clinicians to improve access to research and the patient experience are:
- Work with patients as partners and stakeholders from the earliest point right through to dissemination and application of findings
- Ensure that patients’ and carers’ knowledge and experience inform the research question
- Ensure that participants are just that – part of the team and valued for it, rather than ‘research subjects’
- Reduce barriers to a minimum
- Clearly communicate the results of the study to participants, and offer patients the opportunity to ask questions and share experiences.
Get patients involved from the start
Patients and carers should be part of the process – from identifying research priorities and topics, to study design, execution and dissemination of results. For a good example, take a look at the James Lind Alliance and its methods.
What is the question?
Patients know better than anyone what it is like to live with an illness or manage a condition. Is the research question likely to provide answers that will improve health and/or quality of life? Patient involvement from the beginning is likely to ensure that research is more timely, relevant, ethical, applicable and welcome.
What’s in it for patients?
People take part in research for various reasons, but it is of vital importance that patients understand clearly the part they play in progressing knowledge. Like the rest of the research team, they want to see results that bring about improvements in care and patient outcomes. Printed information sheets can be helpful for taking home and keeping for future reference, but they are no substitute for real discussion with a clinician. Never say there is not enough time. Patients are giving their bodies and minds for the common good. In some cases, for example emergencies, real discussion may not be possible, but those cases should be kept to an absolute minimum.
Make it easy, if possible, and possible if not
The barriers to patient participation in research are often relatively simple to overcome, but rarely considered when methodology is being determined. Consider:
- making particular efforts to ensure that the patient group is inclusive and representative of our diverse population. Language, age, race and gender can all exclude patients who might (1) benefit from inclusion and (2) provide important information about the breadth of population who might also benefit ultimately.
- the practicalities: How will participants get to appointments? How will they navigate the premises? What about parking? Public transport? How do they go about claiming expenses? What about their other commitments such as work or caring?
- vulnerability: People who have experienced a major life event (such as a stroke, heart attack, or cancer diagnosis) are vulnerable both physically and mentally. If further barriers exist, they will find it very difficult to participate in research. Contact with investigators should be possible, and simple, between study visits. Consider the different needs people may have – even those who are stable and well need support.
Don’t leave study participants dangling
By the end of a research study, patients will have given themselves, their time and their trust to help ensure that the results are valid and contribute to the evidence base. They should be recognised as valued members of the research team. This means that the last visit should never be the last contact.
Patients have a right to be told about study results. This should be done in a manner fitting for lay people, in language appropriate to their understanding. The emphasis should be on what the results mean for patients and carers in terms of improvements in care and outcomes, and participants should be given the opportunity to ask questions and to share their own experiences.