Update: 11 September 2015 – The final prioritization workshop took place on 3rd September 2015 and the top 10 priorities for research were decided. You can read about it in this blog The blog was first published on 27 February 2015
Last week, in this article for the BMJ, I talked about the power of six words to transform communication with someone with hearing loss. ‘How can I help you hear?’ was a lightbulb moment for me, when I was asked this simple question for the first time in thirty years as a hearing aid user.
It’s often the simple things that matter most, isn’t it? When it comes to managing a health condition, how do we know what matters most unless we ask those living with it? Knowing what matters most is vital for good stewardship of our finite resources to fund research, ensuring that work goes into seeking answers to questions that patients most want answered.
This is at the heart of the work of The James Lind Alliance (JLA) Priority Setting Partnerships, or PSPs. There have already been over 30 of these, on conditions from asthma to stroke, and I’m currently involved in one that is working to find out what are the top ten unanswered questions in mild-to-moderate hearing loss.
JLA Advisor David Crowe explains:
“The James Lind Alliance, a non-profit making initiative hosted by the National Institute for Health Research (NIHR), aims to bring patients, carers, family members and healthcare professionals together to identify and prioritise research questions. This PSP has been set up to identify unanswered questions about mild to moderate hearing loss: its causes, diagnosis, treatments, care and support, and prognosis.”
The PSP includes partner organizations* representing patients, health professionals and researchers. But it also invites widespread public involvement through the surveys which are a vital part of the process, asking people to submit questions about hearing loss which they’d like to see answered.
I’ve asked David and three others from this PSP team to explain more about it. Jean Straus has hearing loss and is one of the patient/public representatives. Natalie Bohm is an ENT (Ear, Nose and Throat) surgeon currently working with ENT UK on GENERATE a project to develop a national research agenda for ENT, Hearing and Balance care. Helen Henshaw is the PSP Coordinator and a Senior Research Fellow at the NIHR Nottingham Hearing Biomedical Research Unit (BRU).
Do we really need more research on hearing loss?
Jean: I suffer from something I call Shrugged Shoulder Syndrome. This means that when you ask your consultant, audiologist, GP, whomever: why did I lose my hearing suddenly? Might I have done something to make it happen? How can I prevent a recurrence? Am I more likely to get it again than someone who has never had it? What’s the connection between the ringing in my ears and my lost hearing? The common answer is shrugged shoulders. We don’t know. Medical research hasn’t come up with answers to your question. We think it might be A but on the other hand it could just as easily be B.
Helen: Hearing loss currently affects more than 10 million adults in the UK alone, approximately one in six of the population. Just one in three people who could benefit from hearing aids in the UK actually have them. For those who seek intervention, this process takes an average of 10 years, which may in part be related to the fact that 47% of those who report hearing difficulties to their family doctor fail to receive an onward referral to Audiology services (Davis, 2007). Hearing loss continues to be an area for which there is poor uptake of available interventions and little systematic data for treatment outcomes.
David: New technologies and approaches to understanding mild to moderate hearing loss are becoming increasingly available. These advances expand the scope of research making it more important than ever that future research is guided by people with personal or professional experience of hearing loss.
Shouldn’t researchers decide what to research?
Helen: Research questions for hearing loss have typically been decided upon by researchers in universities. This PSP is important in redressing the balance of power and enabling those who really understand the issues surrounding mild-moderate hearing loss to have their say.
Natalie: The resources that we have for research are limited, and we need to make sure that we are using them efficiently and effectively to produce evidence that makes a difference to the treatments patients choose. This means that it is vital to use the resources we have for research for the issues that matter to patients. In the past patients (and clinicians!) have rarely been consulted about what matters to them in research and what research we should be doing. PSPs have made a big difference to this, so that the views of people who apply and benefit from research are what determine the research agenda. Knowing that evidence is being produced that is relevant to the real world makes my job as a doctor easier. It means that it fits the expectations that patients have from the care that I provide. This is the reason that I have become involved in this PSP.
Jean: To decide which [questions] are more important than others requires a process of prioritisation and a balanced group of individuals thinking it all through. My role is crucial here. Research scientists might be following a lead from one topic to another, but, hey, I’ve got the problem, and I know that’s not the right way of looking at it!
So how do we find the top 10 priorities?
Jean: Though the project itself consists of a lot of fancy words that aren’t immediately obvious to the lay person like me (James Lind Alliance, known uncertainty, research priority), what I understand it to mean is that research can’t be done on any of my questions or others without pinpointing what the questions are in a scientific way. Moreover, you can’t just barge in saying, “How come you don’t have the answer to my question?” without knowing if somewhere someplace your question has already been answered/researched.
Helen: An initial survey gathered over 1,200 ‘unanswered questions’ which are currently being grouped into themes to derive ‘indicative’ questions that may be answered by future research. A second survey will offer people with hearing loss, their friends, family and clinicians, the opportunity to rank the questions generated by the first survey, in terms of which are the most important to be answered by research. A final priority setting workshop will be held in September 2015, where the ‘Top 10’ most important questions for mild-moderate hearing loss research will be agreed. Survey live 13 July – 10 August 2-15 here
What happens then?
Helen: The NIHR Nottingham Hearing BRU will ensure that the outputs of this process are brought to the attention of research funders, research commissioners and policy makers, to enable future research to answer the priority questions for mild to moderate hearing loss that are aligned to patient need.
It’s good to be involved in research!
Natalie: Determining the research agenda should be democratic, with patients, carers and clinicians taking part in the discussion about how we shape the future of our treatments and care. Taking part in this process is also a privilege; being able to interact with patients in their role as experts in their conditions changes your own day to day practice of healthcare.
David: I enjoy the PSP work as it’s about making a real difference to future research that has on board all of the interested parties through a tried and trusted process of a priority setting partnership. I like the structure and discipline of getting a diverse group of people together, integrating different perspectives, and distilling them down to a handful of research priorities; as always there is a good process, but it is people partnership that makes it work.
Jean: I have discovered there are numerous side benefits too. I get to meet some of the top individuals in the fields dealing with hearing. I am learning about processes in research that I would never have been privy to otherwise. Instead of being locked in, or out, with my hearing loss, I am involved and part of a dynamic energetic process wherein my hearing needs are well attended to as well. Ultimately, I don’t think I will be getting answers to my questions at this stage. After all, the aim of the PSP is only to come up with and prioritise research questions. The next stage is for a researcher to apply for funding using one of those questions. Though they might not be be mine, at least I’m no longer just moaning!
If you’d like to know more about this PSP, you can follow @JLAhearing on Twitter or email JLAhearing@nottingham.ac.uk, where you can also register your interest in attending the final prioritisation workshop.
Read about the final workshop and the culmination of the work of this PSP, with the top 10 priorities identified, in this blog.
*The partner organisations involved in this PSP are Hearing Link, NIHR Nottingham Hearing Biomedical Research Unit , Action on Hearing Loss, The British Society of Audiology (BSA), The British Academy of Audiology (BAA), The British Society for Hearing Aid Audiologists (BSHAA), Cochrane UK, Cochrane Ear, Nose and Throat Disorders Group.
Davis, A., Smith, P., Ferguson, M., Stephens, D., and Gianopoulos, I. (2007). Acceptability, benefit and costs of early screening for hearing disability: a study of potential screening tests and models. Health Technology Assessment 11, 1-294. doi: 10.3310/hta11420.
Page last updated 11 September 2015