TEDxNHS – Inspired by people

TEDxNHS

I was lucky enough to be successful in securing a ticket to attend this year’s TEDxNHS event in London on 15th August. The event is designed to bring together people who work for the NHS; to share stories, experiences and innovations that both celebrate and inspire the workforce. And inspire it did.

The event was held at Wilton’s Music Hall in East London; a fabulously restored theatre styled with worn-plaster walls and vintage decor.  The organising team had secured a variety of sponsors who provided a range of refreshments both during the breaks and in the ‘goody’ bags. It made a refreshing change to attend an NHS event in a stylish venue with good food and drink as appose to the usual hospital training room with BYO sandwiches and lukewarm tea. Easy as it is to condemn such details as frivolous during the current period of austerity – I welcomed the effort of organising team to find a beautiful and unique venue. It really enhanced the overall feeling of the event being a celebration of the attendees.

The programme was arranged into three sections, each with its own theme: ‘Rising to the challenge’, ‘Empowering the mind’ and ‘Embracing the unknown’. Themes consisted of a range of speakers, performers and videos, each representing a unique experience of healthcare in the NHS. Speakers had 10 minutes for their presentations, which maintained the pace of the day and kept the audience engaged. Performances of music, poetry and magic by people who either had professional experience in the NHS, or were people with disabilities and had therefore relied on NHS care, provided opportunities to reflect or relax during the energetic programme. Videos of previous TED talks also offered moments of light-hearted diversion from what, at times, was some quite emotive content.

The speakers represented an impressive portfolio of skills and experience. They consisted of medics, service users, a nurse, an NHS CEO, a parent, a designer and a police sergeant. Their presentations each told a personal story. Some speakers shared tales of developing health services, others offered accounts of intimate and at times heart-rending health events that had affected them. It was hard not to be both moved and inspired by the events that they described but also in their resolve to share their stories to improve the experience of others. The resounding theme amongst the speaker’s narratives was their passion and how this fuels them either professionally, personally or both. I most certainly left feeling #inspiredbypeople.

What really stood out for me about the day was the range of healthcare issues, experiences and innovations that were showcased. In such a large organisation it is easy to loose sight of what is happening outside of individual departments and teams. There is a fantastic array of activities happening in any one Trust on any given day but as employees we rarely get the opportunity to learn about them, let alone celebrate them. There are also many similarities in the challenges that face groups of professions, teams and services. There is much we can learn from the innovations of others but we can also learn from their adversity.  My only disappointment about the event was the lack of Allied Health Professionals on the programme. I would like to see representation from AHPs in future events as I know that we would have much to add to such a dynamic and inspiring programme. I would highly recommend this event to anyone working in the NHS; it certainly achieves, and at times surpasses, what it sets out to do.

 

 

 

Asking the experts

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The inaugural meeting of the expert advisory panel for the Unspoken Voices Project was held at the National Star College (NSC) in July. During this project I aim to put user experience at the heart of my enquiry, so the expert group are a critical lintel in the framework of my research. As such, the success and integrity of this and future expert group meetings are vital to the overall project.  I stumbled upon many logistical barriers whilst planning the inaugural meeting. These included coordinating busy calendars, accommodating long journeys and a seeking suitable and available venues. This resulted in a lot of uncertainty surrounding the viability of the meeting. As late as the week prior to the meeting, unforeseen events cast doubt over whether all the group members would be able to attend. It was therefore with great relief and joy that my supervisor, four group members and I could gather on a sunny day in the beautiful grounds of the NSC in mid-July.

The experts brought a range of life experiences to their role as advisors. Two retired professionals, a speech and language therapist (presenting feedback from two of the students at NSC), and a communication aid user with experience of supporting AAC services and product developers came together to offer their advice on conducting research with people with communication difficulties. Three group members had experienced communication difficulties from childhood and two had acquired difficulties during their adult life. One group member had experience of being involved in health research but for the others, this was their first role within an advisory group for a research project.

Practicalities 

Members of the group experienced a range of communication difficulties. As a speech and language therapist, my instinct was to try to predict the communication needs of the group and to try to make accommodations for any potential difficulties in advance of the meeting. As a researcher, I took a step back and handed the authority for such decision-making over to the experts. I asked the group how I should conduct the meetings, in what form they would like to receive information and how I should manage communication with all members. As a group, we agreed that meetings should be face-to-face to facilitate communication (although many experts were happy to join the meeting via video-conferencing), in the afternoons to accommodate those who have to travel and should last no more that 2 1/2 hours. Members wanted to receive information about the group via email and many expressed interest in receiving information via a web-based information sharing site, such as this blog. Group members generally felt that information needed to be provided in simple language, may benefit from pictorial support and that it would be useful to have short video summaries of agendas and minutes.

Recruitment 

In order that the project is carried out ethically I need to complete a very detailed form, which summarises exactly what I plan to do during the research, how I plan to do it and how I intend to safeguard the participants, to a health research ethics committee. I must be transparent about how I aim to recruit people to the project, ensuring that potential participants are fully informed about what their involvement will entail and what will happen to the information they provide. The standard way of doing this is by providing a very detailed, text-based participant information packs and then securing written consent for each specific element of the project process. I presented drafts of the type of information packs commonly available to research participants. All the experts in the advisory group felt that the level of written information in the draft documents was far too detailed for people with communication difficulties. The consensus was that text needed to be bigger with fewer words and more pictures. The experts also suggested that information should be available on a video that people could access via a link in an email.

I sought the group’s advice about how to make the project attractive to potential participants. We discussed how to encourage people to be involved in the project and the group felt that a strong image might help. The experts reflected on what motivated them to be involved in the group. One individual said “I want to give something back” and another described how communication aids had helped them to overcome the frustration of not being able to say what was on their mind. Promoting the opportunity to get involved and being part of something that could influence change were considered to be key drivers for participation. There was a feeling that too much written information could put some potential participants off and that being able to contact people by email rather than post may be more successful. This feedback will help me to shape my recruitment strategy to fit the needs of people with complex communication disabilities but will involve significant creativity. I have a list of skills I will need to seek out if I am going to realise these suggestions and make my project resources attractive and accessible.

Next steps

I am already looking forward to meeting with my expert group again in the autumn. In the meantime I have plenty of work to do. I need to find a balance between presenting enough information to people involved in the project that they are suitably well-informed, without overwhelming people for whom written text is difficult to decode. I will delve into the dizzying world of vlogging and YouTube to learn about producing engaging and informative videos for both my expert group and for potential participants. I must also develop my skills in presenting complex and dense information in simple language and use strong images to support my expert advisory group in understanding an appropriate level of detail about the project.

One of the aims of the clinical doctoral research fellowship, the funding grant that supports this project, is to develop clinical-academic leaders. Fellows have a responsibility to develop or to maintain their clinical skills while developing academic and research competence. Working with my advisory group over the course of the project will provide an invaluable opportunity to work in direct partnership with people who have communication difficulties. I will also be able to learn directly from the experts how best to support their participation in this project specifically and more broadly in roles outside of their homes and families. This will be one of the ways I build on my clinical experience, enhance my clinical skills and establish new horizons for my clinical practice.

 

Reviewing reviews

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Image courtesy of: http://www.cochrane.org/what-is-cochrane-evidence

I have been reading about systematic reviews recently. They are a useful starting point for any research project as they enable a researcher to scope-out what is already known about their research subject and therefore provide a foundation on which to build the research study. Systematic reviews use defined methods for exploring the literature in a consistent way, and reviewing the results in order to draw conclusions. They must be explicit, comprehensive and reproducible. Methods for conducting systematic reviews frequently, but not always, start by identifying a question that needs answering. They then require a clear framework for identifying suitable research papers: who are the focus of the papers, what intervention is being investigated and what outcomes are important? Systematic reviews also necessitate the reviewer to clarify the types of literature that will be searched, how information will be extracted from that literature and how the results of the search will be analysed in order to draw conclusions. It all should be quite simple. Identify a question, choose a method, carry out a search, evaluate the findings, report. Boom! And yet I am now on week two of reading about systematic reviews and I don’t appear to be any closer to step one: finding a question.

The aim of the review for this project is to find out the words, themes and narratives are used by people who rely on communication aids to define the outcomes and impact of using them. This does not, however, seem to be a very systematically reviewable question. Systematic reviews evaluate the effects or the implementation of interventions. I need a clearly defined population (adults, children, young people, people with acquired communication difficulties, people with communication difficulties from birth), a specific intervention (e.g. AAC in general, low-tech communication aids, high tech communication aids, picture based communication aids, text-based communication aids,), a control group (e.g. other people with speech, language or communication needs, or non-disabled peers) and an outcome (e.g. quality of life, satisfaction, access to work/education, improved relationships). I am reluctant to limit the parameters of my search as I am aware that there is a limited amount of information available on the topic of AAC (The case of the missing perspective…). Yet if the question for the review is too broad, the search will produce too many results to manage, most of which will almost certainly be irrelevant.

My lack of clearly defined question has led me to consider carrying out a ‘Realist review’; a specific method of systematically reviewing information which builds an understanding of the underlying mechanisms at work within an intervention rather than producing an overall review of the results of other studies. In theory, it is an obvious answer to my dilemma. I don’t need a pre-defined question; realist reviews do not focus on the effects of interventions specifically rather they explore what works for who and why; all types of literature can be used to strengthen the theory, not just academic literature of which the pool for AAC is limited. They also allow for the integration of number-based data (quantitative studies) and descriptive data (qualitative studies), and can result in narrative and figurative findings. My review of reviews so far does indicate that this particular method does not have strong presence in healthcare research and I have yet to find any examples of its adoption within either the fields of AAC or speech and language therapy. There are a small number of very well established academics using this method but it still appears to be on the fringes of systematic review methodology. I am not sure that I have the confidence or the experience to blaze this trail at such an early stage of my academic journey. I think I may need to re-read some reviews of reviews and head back to the drawing board.

Communication is key

Image courtesy of: https://wisconbio.org/tag/science-communication/

If I could create a personal word cloud, ‘COMMUNICATION’ would scream out of the middle of it in huge letters. I have spoken, typed, written, drawn and gestured this word multiple times a day in my professional life. During speech and language therapy training, I studied communication in its many forms: spoken, written, non-verbal, dance (well, I remember the bees waggle dance featuring in one first year lecture). It then became the bread and butter of my work as a speech and language therapist; supporting people who have difficulty speaking or writing to communicate effectively is one of the fundamental skills of my trade. More recently, I found ‘communication’ taking more prominence in my life outside of work. Where once day-to-day communication was something I did without much thought – usually face to face, occasionally in writing –  new platforms emerged; each requiring attention to style, with an individual set of interaction rules and an expectation of regular updates. Social media, text-messaging, emails, and blogging, to name a few. “How shall I phrase that?”, “Which emoji best represents how I feel?”, “Does this picture sum up my experience here?”, “How can I write this in 140 characters?”. There were so many novel ways to express opinions and experiences, communication suddenly required consideration in my personal as well as my professional life. Although fascinated by communication (hence my career choice) and able to support others to communicate, I found adopting these new modes of communication challenging. I have learnt to engage with social media platforms, but it has been a slow process.

And now I find that a new set of communication skills is required. One element of my academic training is developing and implementing an effective communication strategy. In order to share my learning, research and to build collaborations for the future, I must connect effectively with stakeholders: my supervisory team, the project advisory group, professionals working in the field of communication aids, my speech and language therapy department and colleagues, participants, recruitment sites, funders, sponsors, the university,… the list goes on. I need to be proficient at communicating with academics, clinicians, experts and members of the public with experience of using communication aids. I also aspire be able to engage and interest people who aren’t aware of communication aids, to raise their awareness of the challenges that people who rely on them face. Twitter has opened up the possibility of networking with people who I don’t know and may never meet but with whom I share a professional interest. I find it difficult to judge what, where and when to tweet however, and am still learning how to precis my thoughts into 140 characters. This blog is my attempt to articulate my research journey to a wider, non-expert but interested audience. Writing for an unknown reader is another communication challenge. How much knowledge should I assume? How do I come across in writing to people who don’t know me? Is my writing clear and accessible? Academic journals are a key mechanism for sharing research, especially within professional and academic communities, yet require a different style of written expression again. Having spent over a year writing one paper for submission to a journal, I then found myself spending days, weeks even, formatting the document so it meets with the journal-specific style requirements.

I started this journey thinking that I was an expert in communication but the terms of reference have shifted. Communication is key to sharing my project with the widest possible audience, to develop a network that will support me on my clinical academic journey and to build a profile as a researcher. But I am no longer the communication specialist; I am a student again.

 

The case of the missing perspective…

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Image courtesy of: https://www.pivotalscotland.co.uk/other-courses/accident-incident-investigation/

This project is focused on gathering perspectives from people about the equipment and services they receive from the NHS in order to inform improvement. There is a growing emphasis on the importance of engaging patients in evaluating and developing healthcare. Traditional methods of gathering data from patients include questionnaires, surveys, focus groups and interviews. Some patients are easier to engage in these methods of evaluation than others. People who rely on alternative and augmentative communication (AAC), or communication aids, not only have difficulty communicating but may have concurrent physical and/or cognitive difficulties which limit their ability to participate in giving feedback via traditional methods too. As a speech and language therapist, I am dedicated to supporting people who have communication difficulties to get their message across. As a clinical researcher, the experiences and needs of people who have communication difficulties and use AAC are at the heart of my academic enquiry. Professionals need to understand what people want to achieve from using communication aids in order to provide the most effective equipment and support. Thus, I started my current investigation to uncover the perspectives of people who have complex communication needs and may benefit from AAC. Where would I find them? Or did they ever exist at all?

During a research secondment, I attempted a protocol-driven literature review (dipping my toe in the water of the world of systematic reviewing), exploring what interventions were recommended for adults who required AAC to support their communication. I discovered that there was little consensus in the literature and few large scale studies. I asked people who used AAC and who were on (or had been known to) my local services’ caseload what they considered helped them to use their AAC effectively.  I returned to the literature to find out what others had found when they asked people who used AAC about their experiences and uncovered very few papers that directly engaged with people who use AAC. The plot thickens.

I deduced that further investigation into the search for user perspectives literature is required. I intend to build on the literature searches that I have used so far to hunt down any other research that captures user perspectives in the field of AAC. I will continue this line of enquiry by looking at key publications, by following up on citations in those publications and by wading through the grey literature. I am interested in finding out who has used direct methods for gathering feedback (i.e. interviews, focus groups) from people who rely on AAC and what these people say about their experiences. The case continues…

My journey into research

The long road to PhD funding

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Image courtesy of http://www.missalicedesigns.com/wp-content/uploads/2016/01/journey.jpg

I qualified as a speech and language therapist 15 years ago. As a newly qualified therapist, I was totally focused on clinical work and research couldn’t have been further from my mind. Having spent four gruelling years qualifying, I had finished with research, study and academia, and was eager to get on with the job. I loved clinical work and found it deeply interesting and satisfying. I worked predominantly in rehabilitation, shifting from inpatient units to outpatient teams.

As my career evolved, I outgrew my undergraduate knowledge and I found that I had questions about my clinical practice that training courses and superficial forays into the research literature didn’t adequately answer. The opportunity arose to be a consultant on a research project and I discovered satisfaction in critical enquiry. I undertook a masters course to develop my ability to search for evidence to support my clinical practice and to improve my critical thinking skills. A position came up which would allow me to further specialise my rehabilitation skills by leading on alternative and augmentative communication (AAC). I used this role to apply my learning from the masters course to evaluate and develop the processes that underpinned the clinical service. I was able to present our services’ development at the Communication Matters conference; a conference that focuses on sharing knowledge and developments in the field of AAC, where I was inspired by the technology, professionals and individuals who used AAC in attendance. But I still had unanswered questions about how I could continue to improve our service and the support we provided locally to people who rely on AAC.

I applied for and was successfully awarded a clinical academic internship with the Bristol Speech and Language Therapy Research Unit. I used this opportunity to explore the literature about interventions for adults who use AAC. I also carried out interviews with people who were experienced users of AAC about what they felt supported and inhibited their use of AAC. I used the results of these two investigations to develop a research question and an application for further funding.

I was successfully awarded funding for a clinical doctoral fellowship by Health Education England and the National Institute for Health Research in 2016 and I started my PhD in April 2017.