Tasmin Rookes

This blog is written by Tasmin Rookes, Research Assistant for the PD-Care programme. Tasmin also runs a Research Assistant group – if you’d like more information about this group please email Tasmin here: t.rookes@ucl.ac.uk

Since the COVID-19 pandemic research activity, such as identifying, consenting, and assessing participants has been conducted online and remotely. With many clinical populations being older adults, without consistent levels of technology knowledge, this has introduced some challenges. Reflecting on the PD-Care feasibility study, I share our experience and learnings of conducting remote research with people with Parkinson’s.

Identifying potential participants

On the morning of clinics, send reminder emails to the clinical teams to remind them to approach potentially eligible participants with a copy of the participant information sheet.

When following up with a phone call to discuss further, have a loose script with the key information points participants need to know, including the next steps involved to get them enrolled.

Where relevant, recruit or include participants carers or family members to assist with explaining the study, setting up technology or assisting with future research activity, particularly if the person has mild cognitive impairment.

Consenting participants

If obtaining consent online, follow-up with phone calls or emails to reminder people to complete the consent form and keep it at the forefront of their mind. Older people often aren’t used to managing an email inbox, so sometimes resending the link to the consent form can help.

If obtaining written consent, via the post, follow-up after one week of posting to determine if it has arrived and if they have any questions. Be prepared for postal delays and always offer to resend out if participants have waited a long time.

If obtaining verbal consent, ensure you have posted or emailed a copy of the consent form, so participants can follow along. Ensure they are engaged by asking them to state their name and date for the recording. Read through each statement clearly, asking participants to confirm they consent to each statement. Be prepared for questions and consider that your answers are being audio recorded. Save audio recording in a secure location and complete a consent form stating verbal consent was obtained, to send a copy to participants, GPs, and upload to patient notes.

Completing assessments

Be aware of potential risk and safeguarding. If a participant discloses something concerning, follow the guidance in the study protocol and ask for advice from senior colleagues. Keep records of all decision making and collect the participants GP and clinical team contact details for future use.

Completing assessments can be lengthy and is more tiring when completed on a screen. Be transparent about how long they will take and offer comfort breaks or break into shorter sessions where appropriate. Also, providing a written copy of the assessments to participants can help them to follow along with the questions as they are being asked. Allow plenty of time for the assessment and give participants time to think and respond.

Consider whether the assessments you want to do can be completed remotely. If not, consider self-report measures or look for measures that have been adapted to be delivered remotely.

It is inevitable that some assessment appointments will be missed by participants. Send reminder letters, emails, or phone calls to prevent this from happening and provide them with your contact details, so they can inform you if they can no longer attend. Try to reschedule as soon as possible, particularly for follow-up assessments where timelines can be tight.

Be prepared for technical issues and understand how to talk someone through joining calls using the chosen software. Get an understanding of how confident they are, so you can support them and factor this into the time allocated.

Key messages

Most people are happy to conduct research remotely and on the whole older populations are comfortable using technology if they are supported.

Have a clear process in place and test with the team or PPI members before starting to recruit, to iron out any potential issues.

Allow plenty of time at every step, being patient, friendly and calm. You may be the only person they speak to that day, or they may be anxious about using the technology or completing the assessments, so this may help put them at ease.

Consider all potential impairments participants may have, including vision, hearing and speech, and have strategies in place to overcome these and be inclusive. These include, offering study documents in large print, providing contact through email or letter, and having a carer or family member present to support.

Be organised, keep logs of what has been done and what is still to do, so recruitment and follow-up schedules are adhered to.

As we develop more digital interventions and conduct research activity remotely, adapting our approach and using the tips outlined above, successful research conducted remotely with older populations is not only feasible, but can be successful and beneficial.

In this weeks post Katy Hopkins   talks about her unique experience of working with two theatre companies to shape the script of a play about mental health.

Over the past week I have had the pleasure of working with two award winning theatre companies, HOAX and Luminary Theatre to explore the multifaceted concepts of mental illness, treatment and “wellness” through a series of interactive workshops involving academics, clinicians and members of the public. This was a dynamic and exciting two-way process of communication. In the words of one workshop participant, a mental health professional, “ever since I left the Hysterical R&D Workshop I have been seeing the world with a new perspective”.

The workshops’ primary aim was to refine the script of a darkly comedic, absurdist, play about mental health, “Hysterical“, by playwright, Karis E. Halsall of Luminary Theatre in collaboration with HOAX . Together with academics, clinicians and people with experience of mental health difficulties we built a picture of “ideal” and “actual” journeys through the mental health system. These informed the second draft of the script, which was iteratively refined throughout the week. We used multiple facilitation methods, drawing on theatrical techniques to explore the use of vulnerability on stage and understand how this relates to the concepts of mental health and “wellness”. 

The week began with an unrehearsed reading of a first draft script to a mixed audience of mental health experts, followed by a feedback session in which we drew out audience responses using a bottom-up approach, aiming to get their views without colouring them with our own. Interestingly, many of the issues the creative team had identified were also picked up on by the audience, and some very excellent suggestions for improvement were made.

Two intensive workshops followed, exploring the core themes of the play with different groups of people (academics and clinicians on one day, members of the public with lived experience of mental health problems on another). We sought views on “wellness” and “illness”, diagnosis, barriers to seeking help and how to empower mental health service users to take a more active role in their treatment. We were fascinated to note the different, but complimentary perspectives from service users, clinicians and academics. Mental health practitioners in particular expressed a strong desire for more collaborative practice, but a lack of knowledge or confidence to implement it. Service users expressed a similar desire, feeling unheard or uninformed, but not knowing how to access information. One suggestion that arose was a mental health “MOT”; a brief but regular mental health check (similar to screening programs for sexual health or cancer), delivered with the understanding that everyone has a “mental health”, whether “well” or “unwell”. Other suggestions that stood out were upskilling Learning Support Assistants, Community Health Workers and others who engage with the general public on a daily basis to talk about mental health. The production of simple leaflets with easily digestible information about mental health treatments (medication and psychological therapies) and their pros and cons (similar to those available for contraception) was also suggested.

The final day featured a rehearsed reading of a second draft script, refined based on learning from the preceding workshops. The audience included academics, clinicians and members of the public, some of whom had attended previous workshops and some who had not. We were really pleased to note that the audience picked up specifically on, and praised the importance of, aspects of the script that had been refined based on learning from the workshops. For example, the nuanced portrayal of the mental health nurse was commended, as was the strength of the parallel drawn between western and tribal approaches to mental health. Both of which were constructively criticised following the first reading.

Thus grounded in clinical and academic knowledge as well as lived experience of mental health problems, this project is a unique attempt to create a piece of theatre that has a reach far beyond the usual theatre going audience. “Hysterical”, carries strong themes questioning societal concepts of mental health and wellness as well as traditional gender roles. The team also plan to curate visual art exhibitions at various points in the project, which may include items produced by audience members during or after the performances, and a program of outreach will run alongside the play. Ideas from the R&D process have given us a strong steer on what these might look like, although we are still collaboratively designing them. 

The creative team have high hopes for the project, aiming to be a vehicle for destigmatisation, knowledge transfer, and opening a two-way dialogue between academia, mental health workers and the public. We hope to secure Wellcome Trust funding for the further development of the project including additional performances, and a more intensive program of outreach and evaluation.

A preview of the play will be shown at the Vault Theatre Festival in February 2016, and the show will travel to the Brighton Fringe later next year. Contact Katy for more information katherine.hopkins@ucl.ac.uk or visit theHysterical website.

Nick Freemantle and Greta Rait publish an editorial in the BMJ on a meta-analysis which found that in the cutting edge field of stem cell research in heart disease the more discrepancies found in a paper the greater the improvement in outcome.  On average, trials with many errors show improved ejection fraction, while trials with no errors find no benefit. What should we make of this?

Find the paper here

The authors work with PRIMENT Clinical Trials Unit, a partnership between the UCL Research Department of Primary Care & Population Health, Division of Psychiatry and the Department of Statistical Science.