Pulling everything together

We are now at the stage of reviewing the evidence and information collected in the various elements of this project and starting to interpret the findings. To assist in this process we are tapping into health professional and research methods expertise from the project Advisory Group.

At our third Advisory Group meeting the research team gave an update on each of the elements of this project. The systematic review has been completed and the discussion and recommendations sections are being compiled. The survey of health professionals has closed and the responses collated for analysis. The third element, the qualitative study of patients’ perspectives is almost complete with just a few more interviews to be held. In the meantime we have started coding and the data emerging are looking very informative in relation to the questions we set out to answer.

Meeting with the Advisory Group was a chance for the research team to ask the health professionals for their thoughts and advice. For example there was a discussion about how often patients are reviewed to assess how they are managing with an orthotic, a question in the healthcare professional survey. The Advisory Group suggested comparing this information with BAPO guidance on frequency of patient review. Some of the survey respondents dealt with in-patient groups and after discussion with the Advisory Group we will try to separate out the in-patient and out-patient results.

The next stage now is to complete the analysis of the qualitative study and write the full report for submission to our funders, the NIHR HTA programme. Once they received the report they will check it and send it out to external peer review. We will be asked to address any comments from the peer reviewers and then the report will be published in the NIHR journal library. We will also be disseminating the findings in a variety of other ways – which we will tell you about in another blog.

Blogger: Catriona McDaid

Involving patients and the public in research

Over the last few years there has been a sea change in both attitudes and processes related to the inclusion of patients and members of the public in health research. For a start there’s been a radical over haul of the way people are approached to take part in research studies. Legislation and regulations have improved protection for those taking part in research through ethical requirements to safe guard and inform potential participants. Current efforts are being made to continue the streamlining of processes for researchers while still providing ‘protection’ for participants.

Perhaps the biggest step was recognising that research participants are just that – participants in research and not ‘subjects’. They could have valuable input not just by taking part but by feeding back on what was important to them, not always what clinicians had anticipated or researchers used as outcome measures. So why not involve patients and the public in the design and even the allocation of funding for research projects? Well that is exactly what is now happening.

The National Institute for Health Research (NIHR) funds an organisation called INVOLVE to support public involvement in NHS, public health and social care research. The work of INVOLVE aims to promote the empowerment of the public to become more involved in all aspects of research. Their website provides information about how to get involved without being a participant in a study. They make linkages between the public, researchers, NIHR and other funders and sponsors; and encourage evaluation of the impact of public involvement in all stages of the research process.

The NIHR encourages participation in research through their “OK to ask about clinical research” campaign. This has had the combined effect of making both patients and busy clinicians think about whether there may be a trial going on that could help make a difference. Amongst INVOLVE’s many resources is a searchable database of research projects in the field of health, public health and social care that have or plan to actively involve members of the public as partners in the research process. NHS Choices also provide information about clinical trials and medical research along with a clinical trial search facility.

By getting patients, carers and the general public involved in all aspects of research, there has to be a better understanding of the issues from all persectives and greater relevance for the research undertaken and end results.
  

A little bit about the NIHR and our funding

The National Institute for Health Research (NIHR) was set up in 2006 to rationalise and improve the efficiency of funding and commissioning of health research. The NIHR’s mission is,

 “To provide a health research system in which the NHS supports outstanding individuals working in world-class facilities, conducting leading-edge research focused on the needs of patients and the public.”

The NIHR manages its health research activities by providing: the infrastructure, made up of clinical research facilities, centres and units and communication networks; support for the individuals carrying out and participating in research through the faculty; programmes to commission and fund research; and by providing unified systems for managing research and its outputs.

NIHR research programmes evaluate the effectiveness and impact of new healthcare treatments, find new ways of preventing, identifying and treating ill health. This includes facilitating timely progress of research in the laboratory through to clinical trials; commissioning research into the way services are delivered, and interventions intended to improve the health of the public and reduce inequalities in health. This evidence is than made widely available to ensure that decisions about health and social care are being informed by the best possible evidence. The NIHR journals library includes reports on all NIHR funded research.

The OKIS project is being funded through the Health Technology Assessment (HTA) Programme: the largest of the programmes, it funds independent research about the effectiveness, costs and broader impact of healthcare treatments and tests for use in the NHS. The HTA programme identified the need for research into the effectiveness of orthotic devices for knee instability in people with MND or CNS disorders and put out a call for those interested to say how they would go about answering the research question. All the applications were peer reviewed before the funding was awarded. Our intention to create this blog was favourably commented on by the peer reviewers!

The NIHR is a large and complex organisation. The recently launched new website provides information about the NIHR, what it has already achieved and what the future holds. So find out more about the work of the NIHR and how research is funded and commission, you can go to http://www.nihr.ac.uk/

Bloggger: Alison Booth

What makes a review systematic?

The first of the three elements of the OKIS project is to carry out a systematic review of the existing evidence on orthotics for knee instability in adults. But what exactly is a systematic review? The short answer is that it’s a rigorous way of identifying, evaluating and summarising all the relevant research papers on a given topic. So far so good, but what makes a review ‘systematic’? It’s because it follows a strict protocol or plan where the research methods are set out in advance and are stuck to throughout the review.

The first step of a systematic review is to specify the research question in terms of the study participants, the intervention, the outcomes and the types of study to be included. This is essential information in the protocol. We then conduct a thorough search of electronic databases and other sources for all the relevant literature to answer the research question. We extract data from the relevant studies and assess their quality and finally synthesise the results. We’ll post information about what’s involved and what we find at each of these stages as we reach them.

At the end of this systematic review we should have an unbiased assessment of the existing evidence on the effectiveness of orthotic devices for knee instability. This will, we anticipate, show us what best practice is and where further research is needed to improve knowledge in this area.

Over the course of these blogs we’ll tell you more about the systematic review process and keep you up to date with how we’re getting on. I have conducted reviews on many topics but I’m particularly excited about this one as the results of it will be combined with the views and experiences of health professionals fitting orthotics and the views and experiences of those who have been fitted with an orthotic device for knee instability. This should make sure the project overall provides robust information useful to practitioners, patients and those commissioning and providing services.

Blogger: Debra Fayter

P.S. If you're keen, you can see the detailed protocol for this project on our funders' website: http://www.nets.nihr.ac.uk/projects/hta/133002 

And we've started!

It was great to get the project started - on the auspicious day of 1st April(!). Although it is the beginning it has felt like quite a journey getting here. The project was commissioned by the NIHR HTA programme back in Spring 2013 when they advertised an outline of the question they wanted addressed and invited proposals from researchers. But the HTA will have started exploring it as a possible topic for commissioning research on well before then. If you are interested in how HTA prioritises topics for research you can find out more information by following the links on the HTA Programme website.  Members of the public, health care professionals and policy makers can make suggestions to NIHR about any ideas they would like them to consider for funding. You can find details of how they identify research questions and access the on line suggestion form at http://www.nets.nihr.ac.uk/identifying-research.

The overall questions to be addressed by this research project are: what orthotic devices are currently in use in the NHS for knee instability for people with neuromuscular conditions, what are the costs involved and what further research is needed. An important aspect of our work is to find out what the most important issues are for patients. Our research project is intended as preparatory work to inform a different piece of research sometime in the future which will look at the clinical and cost-effectiveness of different types of orthotic management of the knee in people with neuromuscular disease.

We are starting with the systematic review of previous evidence. However we have also started planning the qualitative study of the views of orthotic users as we will need to apply for research ethics approval before we can start recruiting people to take part. We have also started planning exactly what we need to ask healthcare professionals delivering orthotic services and how we can make sure we get a good response rate to the survey. So please feel free to tell anyone relevant about this blog and our research project and help us build up a network.

Blogger: Catriona McDaid

Getting the perspective of patients

A priority for the OKIS project is to recruit two people to bring the perspective of patients to our Project Advisory Group. We have prepared an advert and a description of the role to send out to relevant patient organisations.

In summary:

• The role of the Project Advisory Group is to make sure that the research takes into consideration the views of patients and healthcare professionals and to ensure the research is of a high standard.
• The project will last 12 months, starting on 1st April 2014
• The group will meet three times over the year and we might also contact you occasionally in between meetings.
• We were seeking two people who:
• Have been offered an orthotic device to help with knee problems related to a neuromuscular condition
• Are comfortable working as part of a small team
• Communicate effectively and are willing to share their opinions at a meeting and listen to the views of others
• Are able to attend meetings at the University of York– so live within easy travelling distance of York

The people who express an interest in joining the project will take part in a brief telephone interview and the successful applicants appointed. We will be offering an induction session and mentor from the team should they wish some support in their role.