Epiphany
Where I'm at
Chapter 1: I need to finish including LLS comments & find a quote for my thesis statement. Forward to supervisors 1 & 2 if completed before Christmas.
Chapter 2: Supervisor 1 and ex-Supervisor comments are in, awaiting LLS detailed comments (LLS working on this now)
Chapter 3: Supervisor 1 comments in, ex-supervisor comments to be added, awaiting LLS comments
Chapter 4: Plan, block in sections
Chapter 5: Plan, block in sections
Ethics: 15 copies to rural site by 6 February, take Head of Department paperwork to metro site, find out whether I can be reimbursed for costs of travel to rural site.
Miscellaneous: Extract material from ethics application for dissertation.
Ethics committee experience 2
Last night I went to the 2nd of my ethics committee hearings. I'd hoped that I would be more on top of things this time, but my heart was pounding while I waited to be invited into the Board Room where they met.
Again no-one introduced themself, however I was offered some water, which I gratefully accepted. The Chair explained that I needed to talk to my submission and then she would ask for questions. I was very nervous and opened a bit feebly, though I felt more confident as I proceeded. I spoke about why I thought the work could be important to clinicians and described some of the background to the study. I think in the future I will bring my flow chart, draft matrix and a few other props to help me through these kinds of moments.
I was asked a heap of questions. One committee memebr asked me to explain what a nurse clinician was, as opposed to a nurse. The same member asked why I hadn't included pathologists and pharmacists in my sample, since I was missing out on a valuable source of data. I replied that there was no agreed defintion for Allied Health Workers in Australia and that the definiton I had used did not list these disciplines as AHW. The ethics member did not accept that explanation and reinterated her view that the exclusion of pathologists and pharmacists limited the usefullness of the research . I then agreed that these clinicians were a source of valuable information and said that I felt looking at the way pathologists and pharmacists work with HIS would provide an interesting basis for future research.
I was asked how I would handle a situation where a partipant revealed the organisation was in breach of the law. I explained that I felt this was extremely unlikely but that I did feel it was probable that a participant may reveal that they do not comply with organisational policies. I then explained that I was not mandated to report these matters and that since I would be making draft analyses of the aggregate data available to all participants, including senior IT and IS staff , that these matters would rapidly be drawn to the attention of hopital management.
I was asked to clarify what would happen if a participant decided to withdraw from the research once I had collected information from them (I would withdraw the information from the analysis, as I have capped withdrawal at the stage where the dissertation report is drafted). The committee suggested that I amend my recruitment poster to include assurances about confidentiality, and I agreed.
The committee also asked about my emergency procedure and I explained that although I did not anticipate any problems, I had prepared a procedure to prepare for an unexpected eventuality, such as a fire etc etc.
I neglected to add the survey tool to my paperwork (oops) so I had to describe that in some detail. I was also asked to describe precisely what it was I wanted from hospital departments.
A question that amused me was about funding. The committee asked whether the level of funding for the research was sufficient or too much. I laughed and explained that since it was intended to support me while I conducted the research that it certainly was not too much and that top ups were welcome.
Finally, I was asked to describe how the information obtained from participants would be used in the dissertation. I described my data analysis methods, how I planned to graphically display the analysis and also talked about the software tools I would be using.
When I left I felt OK, but didnt really think it had gone all that well. As is becoming my habit, I left my red cardigan there (I seem to leave it everywhere... wonder what that means?). When I called to collect it today, the Committee Secretary told me that the HREC had given my project complete approval. She then complimented me on the presentation and said that the Chair had asked her to note the high quality of my submission and the excellence of my presentation in the minutes. When I drove up there, she printed out an unconfirmed copy of the minutes so I could get going on my responses to the committee. All in all I was really surprised and very pleased by the whole experience. I thanked the Secretary for her support and guidance throughout the whole thing. I was glad to see that she seemed pleased by my thanks and she invited me to drop in next year when I start collecting data.
It feels good to have achieved another step on the way to completing my PhD.
The National Health Information Summit
I found the 2 days I spent at the Summit to be really useful.
I made some great contacts, who I will email later on today. I find it much easier to have a "normal" conversation with senior people than to try and ask an intelligent question. For example, I introduced myself to the head of the Council for Safety and Quality in Healthcare and followed by saying how much I enjoyed his presentation. he asked me why and I was truthfully able to say that I often felt alone in my research and it was fabulous to know there were others interested in my field. We then discussed my work a little and he gave me his business card with instructions on how to get email directly to him.
I also found out about a whole range of government committees and organisations, both state and federal, that I had no idea existed. I was amazed by their intricacy and the way they interconnect. Their sheer volume was impressive, but I also wonder about whether their might be better ways to organise them. I suppose the politics of the situation would put paid to that, though I won't go into the details of health sector politics here.
I audiotaped the proceeding, and the organisers will send us hard copy of the presentations in February, which will make a very efficient record of the event. It also means I'll have information on the sessions that I didn't attend. I always find multiple sessions in a single timeslot annoying since I usually want to go to everything. A copy of the proceeding means I will at least be able to review the presentations I missed.
I got some really significant information for my thesis from the conference, for example, the consent model for HealthConnect has changed because of the NT trials. The new consent model will flow better for patients and for clinicians, but I wonder how practical they are. Well, I wonder how practical the whole concept of a voluntary EHR is, it will all depend on how people work with them. Certainly, they are better than paper based recrods in a variety of ways but it would be misguided to think of them as a complete, accurate, health record. I hope there is room to discuss this in my dissertation.
Also, openEHR has been evaluated in the South Brisbane trials. I will check the website for more information, but I got heaps out the HealthConnect/openEHR presentation.
I got some great stuff about how the Commonwealth has cornered Victorian health authorities into agreeing to develop VicSmart in a way that complies with the HealthConnect technical and architectural standards. This means the way ahead for 18308 as the default Australian standard is clear- no more conflicting standards at a governance level.
I'm going to check a whole heap of links that I got from the conference. If even half of the links I got out of the Summit pan out, I'll be miles ahead. I'm really glad I made the time to go, even if I did feel exhausted by mid week.
The third site
Well I have the third, rural, site for my research. It was worth spending the entire day driving because I found the CIO at the site asked particularly perceptive questions and I don't believ i could have gained his trust without the visit. As it was, I found addressing his questions and those of his ICT manager pretty hard work. I was glad I had worked though the issues they asked about beforehnad, the meeting was NOT the place to be hesitant.
All I need to decide now is whether to send my 15 copies of the ethics paperwork there by courier before Christmas or whether it's better to leave it until afterwards.
I have to appear before another ethics committee this week... answering peoples' questions about my work is tough going sometimes but it does force me t0 think stuff through and to clarify my ideas, all of which will be very useful when I write the dissertation.
The ethics of paper-based ethics applications
I've just finished photocopying a 50 page plus document and I began to wonder about the ethics of ethics applications. My work requires a multi site application which invloves photocopying a total of 22 copies of each 50+ page ethics application. That's around 1100 pages of paper.
The ethics paperwork can't be formatted so you fit 2 pages to a sheet nor can it be double sided.
Ethics committees look at 100s of applications every year, so the volume of paper used by researchers applying for HREC approval must be enormous.
I think that ethics committees should look at alternate ways of distributing material, perhaps using a variety of technologies, like e-mail, the web, and data projectors at meetings. Some committee members may need paper versions, however I bet that many of them do not. What is more, if committee members do need paper version, why can't they at least be presented on double sided paper? Double sided copies would half the volume the paper presently used for ethics applications.
How ethical is it to use a forrest to apply for ethics approval for research? What a waste of time, effort, and natural resources.
The ethics committee experience
The ethics committee experience was pretty intimidating. If it wasn't for the fact that I had one of my supervisors with me, I think my heart would have pounded out of my chest (thank heavens for supervisors I say).
We entered the waiting room outside the Board Room and a couple of researchers left a couple of seconds after we arrived. They looked upset when then rushed off down the corridor... not a great omen. A few minutes later we were invited in by the Secretary.
We entered and sat down at a huge round table that filled the room. No-one introduced themselves and everyone looked very serious. Luckily, the HREC committee member that asked the first question was smiling as he spoke and that made me feel a bit better. He asked questions about the validity of my research design and whether my interview/survey tool had been piloted. He addressed the question to my Supervisor and in the ensuing silence I realised she wanted me to speak, so answered his question as fully and openly as I could. Half way through my answer he stopped me and added that he thought my research design was very good, as was the tool, in a tone of voice that indicated he had meant to open with that comment. I began to feel a little more confident from that point forward.
I was also asked about how I planned to protect the privacy of the clinicians I interviewed given that I was asking them to expose themselves and their work practices, which was way easy to answer.
Another committee member asked me how I could guarantee that another researcher would not come up with an alternative to my model and claim it was better. I said I couldn't and that this was the nature of doing research. I added that regardless of other research, I was confident that my model would withstand any scrutiny because it was standards based.
I was asked what would stop another researcher in the field beating me to the punch. I told then that was unlikely, since in the 2 years of my study I had only come across Walter in New York, and that he was working on developing broad OECD standards. I explained that it is a wide open field, with the exception of white and grey papers.
I was asked about how I'd ensure participants were satisfied/happy with the way their responses were recorded, or something along that line. I explained then about my interview technique and also that participants would be able to read over their responses before the interview wound up, along with some other mechanisms I had built into the data collection methods.
The committee also asked about whether more than one researcher would be conducting the interviews (in my dreams.. wouldn't that be delicious), about data storage arrangements and the security of various devices. By this stage, a couple more of them were smiling at me when they spoke, which was kind of encouraging.
Finally, the Chair asked whether I had considered patenting my model/conceptual framework. he felt that it could be worth a lot of money in the future (wow). I was a bit floored and so threw that one to my supervisor. She explained that it already belonged me in terms on intellectual property, but that we'd follow the suggestion up.
There were a few other questions too but I don't remember them. Its like there were 2 of me. One person was answering the questions and the other person had a heart that was pounding and was full of fear, but monitoring the effect other me was having on the members of the committee too. Both parts of me were too caught up in other things to remember the details of those other questions.
Afterwards, we were like little girls. We ran up the corridor and giggled about stuff for about 10 minutes I think. I felt great that it was over and I had aquitted myself well. My supervisor was really pleased too. She suggested I draft the ethics section of my dissertation by extracting the stuff I have in my ethics application and supplementing it with the stuff i told the ethics committee about. She was also excited about the idea of patenting the work and the prospects of looking for grants to fund further work in my area, along with some post doc stuff after the doctorate.
I felt so relaxed after the meeting. Now I have to start preparing for the next 2, but this experience means I feel a bit more confident going forward now.
Tomorrow I'll write about the Taskforce conference and my thesis, its all bit too full on to write about right now.
No Xmas parties, but a 3rd site and ethics approval maybe?
I have meetings scheduled for both days when I have been invited to Xmas parties. :( I'll be missing 4 of them over 2 days, which is a bit sad since I always love the excess of all those parties.
Today I handed over the 2nd of my ethics applications. I honestly didn't think I'd get to this point a few weeks ago. One of the commitee Secretaries is quite flexible and understands that when Heads of Departments (HoD) are also clinicians, they can't always be at meetings they commit to. That HREC has let me put my paperwork in without the HoDs' approval, although data collection will be subject to their authorisation. I only have 2 more to go, 1 tomorrow morning and 1 next week. Its been a real scramble, but I made it.
The secretary of the other HREC committee wanted everything before I submitted ethics paperwork. I had my last HoD interview this morning, which is 1 day over the deadline. However the secretary allowed me to submit a half a day late- I had till midday. I suppose she was also pretty flexible in allowing me to go over the deadline because a HoD had cancelled on me. Actually, on reflection, both the secretaries of the HREC's were flexible and helpful.
I think the secret of dealing with the secretaries of HRECs is to respect what they do and their workloads and to get in touch with them for advice when one is confused. Certainly, by the time I submitted my paperwork, bothe secretaries knew me by name and were very friendly.
At one of my meetings this morning, a member of the HREC was present. He congratulated me on the professionalism of my project protocol and gave me some tips on how to handle certain questions of the HREC. He felt they were quite quant focussed and would need me to explain how my qual research design could be validated. He also asked about my use of Chi Squares for categorical data. He felt the HREC would pass the application with a few minor comments about issues for me to take care of before data collection begins. He was very friendly and enthusiastic about the study, which felt nice.
It's Nina's birthday today, so I'll be cooking a full on dinner tonight. She loved her mp3 player :) Mum and Dad and Saara are coming over too, which will be fun.
My 2nd last HoD meeting is at 9 am tomorrow, which means I'll need to leave home about 30 minutes early and arrange for Mum and Dad to take Nina to school or to see her off if she walks there. Next week I have a meeting with the CIO of my rural site, a national health conference over 2 days, a meeting about the research methods CD (which is close to finished yaaay), a training session on PhD exam procedures and a meeting with one HREC committee, it will be full on.
