Please ask questions: Investigating your own future PhD ideas.

Doing a PhD is an interesting experience – not least because lots of people (including myself pre-starting to have any real interest in research) do not really know what it is! In fact I would say I didn’t really know how research worked and am still finding these things out. But since starting my PhD I have had a number of people asking the same questions, including:

“How are your assignments and exams going?” (There are none)

“Is your course longer than one year?” (Yes I am doing it part time for 4 years)

“Do you get a student discount?” (Yes in some shops!! yay)

“So what days do you actually work?” (My PhD IS my work- and I work Monday, Tuesday, Thursday and the occasional Wednesday)

“Who is paying you?” (The NIHR- the research arm of the Department of Health, and they pay my annual leave, sick leave and pension contributions)

“What about your clinical skills- do you miss patients?” (I remain HCPC registered and I am using clinical skills with research work with participants in my research: win-win!)

“Who’s idea was it?” (Eh mine- but it has evolved with advice from my supervisors)

These are actually all very valid questions.

I really feel there are a pool of potential researchers among the allied health professions who just don’t know much about how to get involved with research or even who to ask. And when I answer these questions they frequently lead to more questions. SLTs are often investigating their own options – they have great ideas and would love to realise them as a PhD! It can be valuable to share experiences to buoy others up to have a go. So many people gave me advice and I am always keen to pay it forward. I would always encourage SLTs to come along to the annual doctoral information session at UCL (just passed but keep an eye out on the RCSLT Bulletin mag in April/May next year). Also come along to an event at UCL- such as the Aphasia Research Group at UCL. This is a great place to network and meet academics. You will need to be supported by an academic who is somewhat interested in your project so they can support and advise you. This type of networking is key. The next Aphasia Research Group meeting is tomorrow at UCL from 3-5pm. Come along and hear some inspiring talks from research SLTs and network. They run 4 times a year and are free to attend. There are also opportunities to discuss any of your own budding ideas and get feedback at our regular research generator workshops:

https://aphasiaresearch.wordpress.com/

On the other hand My friends and family are simply fascinated by this apparent torture (in their eyes) I have let myself in for! They are more likely to ask:

“You’ll be how old when you finish?” (FYI I won’t yet be 40 when I finish so I’ll be really really young still ok!!!!)

“Do you seriously think that a PhD is more flexible for childcare?” (Yes I do! I can make up my hours around my children’s needs and I don’t have to cancel patients so often when they get sick!)

“Are you actually really enjoying it?” (YES I really do love it! I am 21 months in and I still love it)

Do we have to call you Doctor Volkmer when you finish? (Eh YES! But not when there is an emergency hence I will not be using Dr on any airplane ticket purchases!)

These are also all valid questions: And YES seriously I do enjoy it- I feel incredibly lucky to be doing something I enjoy and I feel is going to make a difference to more people’s lives (I hope).

Hearing from people with PPA

So yesterday I ran a focus group with people with Primary Progressive Aphasia and their families. Focus groups are a qualitative research method. They are a means of collecting valuable opinions on a topic or an issue (Wilkinson, 1998). The group discussion allows ideas to unfold and develop in response to the research question. The group can enable individuals to say things in the safety of a group that they might otherwise not say. The researcher acts as facilitator- trying to avoid unduly influencing the discussion but supporting and encouraging everyone to contribute.

Although this isn’t my first rodeo (group) it certainly felt a bit like that in the run up. Recruitment was slightly more tricky then anticipated- hampered by a delay in getting ethics approval due to the unforeseen complexities of this altogether tricky process (refer back to previous posts on this topic as I really don’t wish to bend your ear on this delicate subject in this post!). But really I don’t know why I was surprised. Groups are often harder to recruit to than anticipated – even clinically. Either you have too few (they all take holidays that week or they just DNA) or the next time there are just too many clients. Or the clients don’t gel or they gel too well and you can’t get the work done!

As with any good group, however, I should have trusted in the group milieu. For while I completed the travel expense reimbursements and checked all the consent paperwork was in order the group was already forming, morphing and taking shape. People introduced themselves to one another, they shared diagnosis, experiences and made connections. They shared opinions on the refreshments- what sandwiches and crisps they preferred or whether the weather was too hot for traveling distances across London or via train.They even prompted one another to repair upside down name tags!

As always I am reminded of the importance of the little things. The things I feel are not that significant can have a much bigger impact. Refreshments are a little reward and a thank you, but also a great neutral way to relax and start chatting. Name tags make things a lot easier- especially for people with PPA who may find it easier to read aloud or have difficulties with word recall. And really we are in England- whatever your age, nationality or background the weather and a cup of tea are scripted social conversations that can break down any barrier. And as the group came together to discuss the topic I had introduced the conversation seemed to flow and grow. And well, the content of that conversation is something I will share with you in future publications…..

 

My wonderful consensus group! (and by that I mean the wonderful participants)

I am writing an extra special post this week to thank all the amazing speech and language therapists (SLTs) who participated in my consensus group on Tuesday afternoon. The group was hosted by the Dementia and Mental Health Clinical Excellence Network. I was lucky enough to have 36 extremely enthusiastic and interested SLTs who attended the session.

The meeting used Nominal Group Technique- a method of gaining consensus without undue influence from one particular person or a couple of people. This involves asking people to generate ideas to a question (in silence) and writing these down. Then going round robin style to share ideas, clarifying and discussing them briefly before individuals silently choose their top 8 ideas and write them on separate cards. Participants are then asked to rank the ideas individually. 8 being most important, 1 being least important (putting the cards away as they make decision), then 7& 2, 6 & 3, 5 & 4. These are then collected and collated for analysis. The ratings can be reviewed for further rating and ranking to refine the consensus process.

Prior to the meeting I had felt anxious that the SLT participants may find it boring and tedious and generally a methodological blah! But to my surprise I had really positive feedback. Not only did people highlight that being involved in research made them feel they were being heard but also that the process itself was clinically useful. People described feeling that they had really reflected on their practice and what the key components of the intervention are that they themselves deliver. They felt they refined their motivation and rationale for this activity. A number of people also reported enjoying the process of hearing others opinions and felt this was a great way of learning.

I hadn’t necessarily anticipated the clinical sharing and learning component of this exercise –  of sharing knowledge and developing skills. The committee of the CEN suggested they may even use this type of method again for workshop tasks! What a great experience. I am so grateful to have had this opportunity to integrate a real breadth of clinical expertise into my research project. Now to analyse the data! Argh!

The next hoop- getting research off the ground.

https://commons.wikimedia.org/wiki/File:Girl_twirling_Hula_Hoop,_1958.jpg

Big news:
Me: I have been successful – my research project has been given ethical approval!
You: Fantastic, congratulations, so when does your study start?
Me: Well…hmmm…yes… did I mention R&D approval?
You: Huh? What’s this?

So let me explain- having been awarded ethical approval by the Health Research Authority to conduct research in the NHS I am now in the process of communicating with each of the individual Research and Development departments within each NHS Trust. This should be moderately straight forward as the appropriate paperwork such as the mysterious and complex “schedule of events” has also been approved by the HRA. Having said that I am slightly dreading negotiating the details. In general the trusts I am working in have tiny weeny speech and language therapy departments that don’t necessarily sit where the research is happening – for instance in one trust (as in many) the SLT is managed by the physical health trust next door to the mental health trust where the research is happening. Not an unusual arrangement for us. I wonder if these awkward arrangements disadvantage us in research- we will see.

I am pondering the future- anticipating obstacles so I can be more prepared! I am continually liaising with stakeholders (such as the amazing SLTs who are enthusiastically preparing to host the study) and persevering. In keeping my chin up I am able to view things more broadly – I feel I am developing my skills and learning heaps and am sharing all this with anyone and everyone who will listen. I hope that sharing these experiences and unforeseen challenges can support more SLT researchers to conduct more research in the NHS itself. The NHS is a great resource and patients can directly benefit from research happening within the organisation. I heard somewhere that patients seen in a trust where (NIHR) research is happening have better outcomes. And better outcomes are the reason I am ploughing determinedly onwards!

When the man from Monty Python shares his tale.

https://www.flickr.com/photo/brizzlebornandbred/14391022818

On Easter Sunday my husband thrust his iPhone in my face  happily yelping out; “It’s the Monty Python man, the one with dementia, he is in the paper again”.

Dementia, fronto-temporal dementia and the language variant; primary progressive aphasia, are not diseases I would wish upon anyone. In fact I would never ever wish illness on a person. And yet when a famous person such as Terry Jones suffers this disease it provides a great platform for raising awareness amongst the public.

The article my husband brandished under my nose describes fantastically how people with PPA can lose their ability to communicate, whilst remaining otherwise fit and able to undertake other activities such as walking, watching familiar movies, going to restaurants and maintaining relationships. The article highlights the close relationship that Michael Palin has with his old friend; the value of non-verbal communication and the pleasure of continuing to partake in normal social relationships. The journalist also flags the pitfalls- Terry is now unable to express his opinions, he has changed – no longer able to lead a conversation. In addition he is rather impulsive and he may not have full insight to his condition. This is the nature of PPA. I am so impressed his friends continue to maintain contact, having regular catch ups in restaurants and so forth. Not everyone has that supportive social circle. I suspect it is still rather difficult for him and his family and friends- they may not be sure they are doing the right things, that there is not some other conversation strategy that may work better. Not knowing what someone is actually thinking and feeling is, according to many of my patients and their families, one of the hardest things.

The family have made public their wish to share his tale in order to increase awareness. What a fantastic family. I am always amazed and humbled by how keen people are to help future generations – to contribute to the research and spread the word. These are people who inspire me!

https://www.theguardian.com/society/2017/apr/16/monty-python-terry-jones-learning-to-live-with-dementia

Ethics: the final touches


So the verdict arrived- exactly 10 working days after my NHS Research Ethics Committee (REC) meeting. All these mysterious stages one has to progress through are rather fascinating. This is the provisional opinion letter stage.

The letter provides a transcription of the conversation that occurred during the meeting. Slightly strange  seeing myself being quoted as Ms Volkmer stated…Having said that I can’t recall any or much of what I said and looking at what they have written I sound ok. Like perhaps I actually can convince others that I might know what I am doing!!!? At least as according to their transcription that particular Ms Volkmer sounded like a professional researcher- was that really me!?

I think what really made the difference were some tips I was given for the REC meeting. Here they are (plus a few extras from me):
– Take a note pad and pen to show your keen to get their feedback and ideas
– Be open to their questions and ideas: do not under any circumstance act defensive
– Take on board what they say- smile and thank them for their interest.
– They are there for the safety of the patients – think about it clinically. What would keep people safe in your study? What if a patient suddenly declares they are depressed or distressed during your outcome measures?
– They are also considering your safety and that of any collaborators/junior researchers in your study- think about lone working procedures etc
– They know as much if not more than you but not necessarily on your topic- be ready to explain things- but respectfully.
– They may spot things you and your supervisor miss! So handy  and perhaps a bit reassuring to have another group of eyes on your work!

The chair stated that my project was interesting! (Yes! Fist pump!). Anyhow they have made their provisional opinion clear now phew. Just a couple of details to change. I must amend a sentence and make one other change. Fingers crossed. I’ll let you know when I have actually crossed the ethics finish line and am holding that final letter or whatever they send/give in my grubby little PhD researcher paws!!!!

Ethics: The bit they don’t tell you about!

So for those who haven’t ever submitted an NHS ethics application well phew…..it is a long old slog. Others of you who have – particularly if it was recently then you hear my pain. You may have read the summary of tips and hints I wrote. All I can think of is sharing as much of the experience as possible – I think I may need a virtual ethics emotional support group – for me!

My ethics application has felt like the bit of research people don’t talk about in advance perhaps similar to the parenting stuff people don’t like to talk about in advance either (eg the bit of pregnancy where I got super angry, the whole AWFUL embarrassing things children say in public and the stress of juggling school homework eurgh… I didn’t realise it would feel like MY homework).

Anyhow I am sharing my pain! Sure people said start the ethics application early- my supervisor, my funder and colleagues who had started their PhD ahead of me. So I did start earlier than I had intended- but now I realise I really should have started even earlier. It took forever! Tip no. 1: believe people when they say start early and then start as soon as humanly possible.

Then- don’t give up. It may feel like a test, or a torturous painstaking process to put you off research. However keep in the forefront of your mind that this is for the safety of you and your participants it really is. It is worth reading the horror stories of what previous (horribly unethical) researchers have done. This is why the process is there and it is for the good of the people. Tip no. 2: Remember it is for the good of the people.

Anyhow here I am 9 months later- see I told you it was like having a baby! Today I attended my research ethics committee meeting. The last hurdle- this group of 14 expert and lay committee members are the last hurdle to getting my ethics. So I went at my allotted time- 2.50pm and waited in an empty room until they were ready. And was then invited in for “questioning”. Tip no. 3: They are not mean, they are lovely and will give you helpful guidance and advice (Take in a notepad and pen to make notes- you will look attentive and interested in their feedback then, you also feel better clutching something!)

And the questions begin:
“This is a very interesting and worthwhile area of research”
(So lovely)
“Tell us a bit about it”
“Expand on this (consent)”
“Describe that process again (videoing)”
“Hmmm you may like to change this (images on a questionnaire and use of language on another questionnaire measure)”
“Great use of PPI”

Some frowning, mostly smiles I think!? Am I remembering this correctly? I may be delirious but I seem to have survived (just like giving birth). Tip no. 4: Remember your research is interesting and will be better for having as many eyes on it as possible.

Now I must wait a few more weeks (which seems an awfully long time!) for the final word….I will let you know what they say!