OKIS progress update

The aim of this blogsite was to provide us (the research team) with a way of engaging with people who might be interested in our research project from the start. It will also play a major role in helping us disseminate the final results: but we have a bit to go yet.

The main ‘output’ of our work will be an NIHR HTA report. This report contains details of everything we have done, including the methods, the results and our conclusions from the systematic review, the patient interviews and the survey of health professionals.  We then take an overall view of the results and interpret what we have found in a concluding discussion section and consider what the implications might be for clinical practice and for further research.

The report than has a considerable journey of its own: the draft we have just finished has gone out to our Advisory group members for their comments and suggestions. We then address any issues they raise, before submitting the report to our funders, NIHR HTA programme. They have a team of editors who check the report and send it out to some external, independent experts for peer review. This means every aspect of the report will be examined to ensure that we have done everything we agreed to do when granted the funding, that we presented our methods and results clearly and precisely, and that our discussion and implications sections are appropriate and supported by the work we have done.  The comments of the peer reviewers will be sent to us and addressed before the report is finally returned to NIHR HTA programme to be published in the NIHR Journals Library.

While the report is out for peer review, we will be working on other dissemination outputs. This includes drafting a summary report, a number of blog posts and some academic journal papers. Once the peer comments have been addressed and any necessary changes also made to these other outputs, we will be able to make the findings available. All these other formats will aim to present the essence of the full report in brief and in lay language so everyone understands the findings and implications.

Thanks for your patience, be assured that we will make sure you get to know the findings as soon as possible – just watch this space!

Survey of healthcare professionals: one week left!

Our survey of healthcare professionals (HCPs) who are involved in providing orthotic devices for knee instability in people with neuromuscular disease or central nervous system conditions is well underway. The aim of the survey is to identify the types of orthotic devices currently being used by the NHS in the management of instability of the knee related to neuromuscular and CNS conditions. We also want to find out about patient pathways after referral for an orthotic device and what healthcare professionals think are important outcomes for patients.

The link to the online survey has been sent out through three professional organisations, (ACPIN, BAPO and BSRM) and many thanks to all those who have already responded. The survey will be closed on Monday 2^nd February so health professionals working in this area still have time to contribute to this under researched area. For an invitation to take part, or you have any other queries please get in touch with us at kneeorthotics@gmail.com

Blogger: Joanne O’Connor

AHPs: essential but under valued?

There are over 64,000 allied health professionals (AHPs) in the NHS from a range of different disciplines. AHPs play vital roles within a range of care teams, in hospitals and the community: often working with older people with more complex conditions. They are increasingly expanding their skills to include prescribing and consultant practitioner status, with patients able to self-refer.

QualityWatch, an independent scruitineer of quality in health and social care, has stated that, “despite the size and importance of the AHP workforce, AHPs are rarely the subject of major policy debates and there is a concern that their contribution to care is often hidden, overlooked or potentially undervalued.”  In their report Focus on: Allied Health professionals. Can we measure quality of care?, the authors say this is primarily because of a lack of consistent data nationally on the work undertaken by AHPs.

The report highlights the need to have systems in place that can capture information on all aspects of the quality of AHP care in all settings. The authors also identify the need for continued development of AHP research. The OKIS team are pleased to be helping progress this agenda for physiotherapists, prosthetists and orthotists involved with prescribing and fitting orthotic devices for knee instability. By identifying current pathways of care and finding/understanding where and why variation exists it should be possible to ensure the best use is made of AHP skills for the benefit of patients.

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.
  

How can we know what works?

The news is full of stories the amount of health information available on the internet. The availability of this wealth of information has led to an increase in informed patients being able to have detailed discussions with their doctors. The emphasis has to be on discussions because: not all information on the internet is accurate or based on sound scientific proof; not all patients can distinguish the good from the harmful; and neither can all involved in providing health care. We are all human and therefore fallible.

If you want to know how we mislead ourselves, and how we can be misled by the internet, researchers, and doctors try reading Testing Treatments. The book and interactive site, “urges everyone to get involved in improving current research and future treatment, and outlines practical steps that patients and health professionals can take together to do this.” 

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

Checking we’re on the right course

Wednesday saw our first full Advisory Group meeting, where everyone involved could sit down, check on progress and discuss the next stages of the project. Logistically getting everyone together is never easy though we have found that at least initially it’s good to meet face to face so we can get to know each other. After that it’s easier to make the most of technology and have people join meetings with video conferencing.  As the project runs over 12 months there are only three such meetings planned and budgeted for, so it’s really important that we make the most of the time.

Plans for raising awareness of the project via this blog were agreed, with everyone getting involved in cascading links via their networks. These include key professional bodies, charities and organisations that provide support to people with neuromuscular diseases and central nervous system disorders.

Refinements were made to the details of the studies that will be included in the systematic review.  For example we had originally intended to only include studies with 20 participants or more. But as our clinical experts advised that few if any will include this many participants, we have removed the limit. This means we will capture as much of the evidence as possible in this under researched area.

We discussed the focus groups that will inform the survey of health professionals. Joanne our health economist presented the draft topic guide to the group. Through discussion she was able to add in some additional questions, for example, it will be important to find out whether patients are issued with a spare device or different devices at the same time.

We also discussed the best way of identifying patients to take part in interviews and the issues in recruiting from clinics and non-NHS settings. The routes we use will have implications for gaining both research ethics and research governance approvals, which can be lengthy processes. In order to make sure we include as many patients with a range of conditions we will be looking at using a variety of recruitment approaches so are exploring all the options further.

The structured discussion and resulting advice from group members was invaluable. The ‘Advisory Group’ lived up to its name and function: from offers of practical assistance in recruiting, to highlighting issues that might have been missed, to monitoring project progress.

Everyone agreed that it had been an interesting and positive meeting and certainly the advice from the health professionals was really helpful in informing the next stages. Now all we need to do is follow up on the agreed action points!

Blogger: Alison Booth