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

Survey of health professionals: analysis begins.

Our survey of health professionals is now closed and we are starting on the analysis of the data collected in the online questionnaire. This will involve a relatively straightforward descriptions of the data collected for presentation in the final report. For example, we will look at how many members of the different health professions filled in our questionnaire; how many of them see patients with neuromuscular diseases such as polio; what the different ways of working, are such as working in stand-alone clinics or as part of a multidisciplinary facility. This may sound a bit basic, but currently this information is unknown. We hope to provide a much better picture of what and how orthotic services are delivered in the UK. 

Now we have closed the survey so we can download all the responses collected into a spreadsheet. Each response has a unique identifier so responses to each question by each individual can be tracked without being able to identify the person themselves. We will then ‘code’ the responses so the statistical package can perform the analysis. This simply means all the answer choices have a number assigned to them. For example, the answers to the question “What is your gender?” would be coded as 1 for male and 2 for female. We will use simple statistics such as means (the average value) and modes (the more frequent value); and frequency tables and cross-tabulations to present our results in the final report. For the free text responses we will be using qualitative analysis techniques to identify all the issues raised and will present these findings in a descriptive narrative.

Many thanks again to all our respondents, your time is much appreciated and will form an important part of the findings of our project.

Blogger: Joanne O’Connor

Focus on focus groups

To help us decide what questions to ask in the survey of health professionals, we are organising two focus groups of healthcare professionals.  A focus group is a form of qualitative research where a group of people are asked about their perceptions, beliefs or opinions on a particular topic. For our focus groups we have invited orthotists, physiotherapists, rehabilitation consultants and gait analysts to come along and give their opinions and personal experiences of treating patients with neuromuscular diseases (NMD) and/or central nervous system (CNS) disorders.

For these groups we developed a topic guide, a predefined list of questions to promote discussion. Participants were asked to give their experience of the care pathways of patients with NMD or CNS disorders with knee instability, what types of orthotic devices they prescribe and what outcomes they perceive as most important. These questions are put to the group who have been asked to take it in turns to give their answers so everyone gets a chance to speak. Because of the group setting, participants can build on answers given by others, and agree with or challenge what is being said. Often one person’s comments can trigger ideas, recollections or thoughts in another person – one of the values of the focus group setting.

In order to undertake these focus groups, I submitted an application to a research ethics committee, which included the topic guide and other documents detailing what we planned to do, the recruitment process and how we would obtain written consent from participants. This research ethics process is described in Dorothy’s post: Gaining research ethics approval.

Focus groups are intended to allow an informal environment and relaxed conversation, in contrast to a more formal one to one interview. Given the conversational style of focus groups, the optimal number of participants is about 6-8 people. This gives everyone a chance to speak with ease without having to elaborate too much or be too concise.

The research ethics committee approved our submission in June and the first focus group has now taken place. As hoped, it brought up some interesting points, such as the use of patient vignettes (short stories), to help focus the questions in the survey of health professionals.

Blogger: Joanne O’Connor

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

Being picky: study selection for the systematic review

The OKIS systematic review will bring together the results of all the previous research on the benefits and any harms from using orthotic devices for knee instability in adults with neuromuscular disease. This will tell us what is currently known about the usefulness of the devices. In previous posts, Rocio described search terms and where to search how she went about identifying all the existing studies. In this post I describe what we’re doing with what she found.

Rocio’s searches of a wide range of databases gave us 4233 references to potentially relevant studies.  She put these references into a reference manager program called ‘Endnote’. Alison, Joanne and I sifted through the references to determine which were obviously irrelevant from the information given and which needed to be read as full papers to determine their relevance. To ensure nothing was missed, two of us looked at every reference independently. As a result we identified 485 papers that we need to read in full.

The next job is to evaluate each of the 485 studies against our predetermined review inclusion criteria for participants, interventions, outcomes and study designs as mentioned in a previous post. We will document our decision to include or exclude each study with a reason. Again, two of us will do this and where there is disagreement on the relevance of a study we will discuss it and either arrive at a consensus or seek advice from a third member of the project team. This process of study selection is one of the aspects that makes a review systematic and ensures transparency.

It is too early to say how many studies will ultimately be included in the OKIS review. The above process is time-consuming, but as systematic reviewers we have to be patient! We’ll have our results soon enough!

Blogger: Debra Fayter

Ethical principles: Protecting researchers

Ethics approval for a study to proceed is also concerned with safeguarding researchers. At its most basic, this relates to personal safety, especially if the researcher is conducting research in an unfamiliar setting. Researchers may feel exposed to the possibility of physical threats, or they may experience psychological upset or trauma at what they are told, or feel anxious that they could find themselves in a potentially compromising situation.

Common ways of minimizing potential risks to researchers include training in interpersonal skills; use of established procedures to let staff know their whereabouts and to maintain contact; and the use of ‘debriefing’ if researchers are talking to people about particularly sensitive or emotional subjects.

During the OKIS study, the researchers will use a ‘check in, check out’ system to promote personal safety.

This is the last in the short series of blogs on research ethics principles but I'm sure we'll be touching on aspects in future blogs about progress with different aspects of our project.

Blogger: Dorothy McCaughan

Ethical principles: Ethics of interviews

The place where an interview takes place is important. Many people feel more comfortable being interviewed in their own home environment, though others may prefer a clinic or university room. In the OKIS study, we will ask individual patients where they would like the interview to take place, and the researcher will turn up promptly for the appointment. Interviews will last only as long as the participant wishes, and they may stop the interview at any time.

When interviewing is carried out with regard to the interviewee’s agenda, with empathy and understanding, it can be a very positive experience for study participants. Many people are pleased that someone is taking an interest in their lives and concerns. Good research interviewers try to ‘connect’ with participants, and encourage them to tell personal and detailed stories about themselves. For this to be done ethically, it must be done with respect for the interviewee as an individual.

Providing a summary of study findings to study participants is an important ethical aspect of the research process. In the OKIS study, everyone who gives of their time to take part in an interview will receive a summary of the overall research findings once the study is complete.

Blogger: Dorothy McCaughan

Ethical principles: Confidentiality

The Declaration of Helsinki states that ‘Every precaution should be taken to respect the privacy of the subject and the confidentiality of the patient’s information’ (WMA 2000). Confidentiality is a key issue in research practice. For example, information gained from research must not be disclosed in other settings, such as through informal conversation.

In the OKIS interview study, we will audio-record interviews with patients and then the recording will be typed up or ‘transcribed’. The written accounts of interviews (transcriptions) do not contain any patient identifiers – names of people and places are removed when the audiotape is being transcribed. Each transcription is given a patient identifier, a code number, which means it cannot be linked to a person. Only the main study researchers have the ‘key’ to link the name of individual patients with the identification (ID) code. This helps protect confidentiality of patient data. Information from interviews is stored on the University of York’s password protected computer server and/or in locked filing cabinets in a locked room, in an area accessible only to university members of staff.

Confidentiality also relates to published accounts of the research, in which the identity of the research sites (where the research takes place) and individuals involved should be protected where possible. Names and other identifiers can be changed to protect the privacy of participants. For example, in a published paper, the researchers may refer to ‘‘hospital A’ and ‘hospital B’, situated in a large urban area in the North of England’.

Blogger: Dorothy McCaughan

Is everyone able to give informed consent to take part in a research study?

This is an interesting question which raises a number of issues. For consent to be considered both legal and ethical, it must be: given by a person with capacity; voluntarily given, with no undue influence; given by someone who has been adequately informed; and a fair choice.

What is capacity?

Capacity refers to the everyday ability that individuals possess to make decisions or to take actions that affect them, from simple decisions such as what to have for breakfast to far-reaching decisions about serious medical treatment or financial affairs. A person lacks capacity if he or she is unable to make or communicate a decision about a particular matter because of an impairment of, or a disturbance in, the mind or the brain. This may be the result of a variety of conditions, including dementia, mental illness, learning disability, brain damage, intoxication or any other condition causing confusion, drowsiness or loss of consciousness (e.g. concussion, stroke, heart attack, epileptic fit, serious accident, delirium).

Vulnerable groups

Some groups of people are regarded as ‘vulnerable’ in terms of giving informed consent to take part in research studies. Children (under 16 years of age), people with learning and difficulties and others who may lack capacity to give informed consent (such as people with dementia or enduring and severe mental health problems, or those who are unconscious) fall into this category. The interests of these groups of people are protected in a variety of ways, including by acts of legislation, an important one being The Mental Capacity Act (2005).

Lack of capacity to give consent

The Mental Capacity Act (2005) provides a comprehensive framework for decision making on behalf of adults aged 16 and over who are unable to make decisions for themselves, i.e. they lack capacity. The Act applies to all decisions taken on behalf of people who permanently or temporarily lack capacity to make such decisions themselves, including decisions to include such people in research. All researchers working with research participants who lack, or may lack, capacity need to be aware of its underlying principles and the provisions relating to research. The Act is accompanied by a statutory Code of Practice providing guidance on how it should be used. Researchers and others making decisions involving people lacking capacity have a legal duty to have regard to the guidance in the Code of Practice. The Act applies in England and Wales only.

Children and young people

There are many ethical and legal issues to consider when involving children and young people in research, depending on the type of study being carried out (for example, whether or not it is a clinical trial of a medicinal product (CTIMP), and whereabouts in the UK the study is taking place. In particular, it is important to understand the key concepts of consent and assent.

Consent is a legally defined decision given by someone who is competent, who has been adequately informed (and has adequate understanding), and who is free from undue influence enabling them to make a voluntary decision. The person can provide consent, provided they are competent. Otherwise someone who is empowered by law can provide it (e.g. a parent in the case of children). A child who is not capable of giving consent alone can still be involved in the decision making process with others who are able in law to provide consent. There is no legislative statute in England, Wales or Northern Ireland governing a child’s right to consent to take part in studies other than CTIMPs. Common law presumes that young people aged between 16 and 18 years old are usually competent to give consent to treatment.

Assent is difficult to define and is used in diverse ways e.g. compliance by a child as young as three years old, to active agreement of a young teenager. Assent is agreement given by a child/young person or others who are not legally empowered to give consent. It is important to provide children/young people with information that matches their capacity when seeking assent.

Gillick competence

Case law suggests that if a young person has sufficient understanding and intelligence to fully understand what is proposed, and can use and weigh this information in reaching a decision, they are considered ‘Gillick competent’ and can give consent to treatment. ‘Gillick competence’ is a term originating in medical law to decide whether a child (16 years or younger) is able to consent to his or her own medical treatment, without the need for parental permission or knowledge. The standard is based on a decision of the House of Lords in the case Gillick versus West Norfolk and Wisbech Area Health Authority (1985). The case is binding in England and Wales, and has been approved in Australia, Canada and New Zealand. When a young person is believed to be competent, consent from those with parental responsibility is not legally necessary, although the involvement of parents in decision making is encouraged in most circumstances.

In the absence of law relating specifically to research, it is commonly assumed that the principle of ‘Gillick competence’ can be applied not only to consent for treatment but also to consent for research.

As you can see from the above, researchers hoping to gain consent from individuals to take part in a study must give careful consideration to a range of sometimes complex ethical and legal issues.

Blogger: Dorothy McCaughan

Gaining research ethics approval

Early on in the life of a research study, researchers are required to submit details of their study to a research ethics committee for formal review.  A research study may raise a number of ethical considerations with regard to safeguarding the people taking part in the research.   Any research study that involves NHS patients in England must be submitted to the Health Research Authority (HRA) (formerly the National Research Ethics Service) for review. The HRA is committed to enabling and supporting ethical research in the NHS, while also protecting the rights, safety, dignity and wellbeing of research participants.  The HRA follows statutory regulations based on ethical codes and principles, such as those laid down in the World Medical Association Declaration of Helsinki, which places the interest of the research participant above those of science and society. The HRA is also concerned with protecting researchers who engage in research activities, sometimes referred to as ‘fieldwork’.

Gaining ethics approval may seem time-consuming at the start of a project, when everyone is keen for the study to get underway. However, it is a necessary part of research governance, a means of ensuring and maintaining good standards in research practice in the NHS. Research governance approvals also ensure that undertaking research in the NHS is complementary to the standard delivery of care. The Integrated Research Application System (IRAS) aims to streamline the research application process, incorporating research ethics, research governance and other regulatory requirements in a single application process.

For the qualitative interview study part of this project we have submitted a series of study documents to an ethics committee, whose members will read each one carefully.  The submitted documents include the plan for the study (also known as the study protocol), the letter of invitation to patients, the participant information sheet, which contains study details, and the consent form, amongst others. We have also provided to the ethics committee details about how we will gather and store research information, and how we will ensure confidentiality and anonymity for study participants.  The research ethics committee will not give their approval for the study to proceed until they are satisfied that the proposed research meets ethics requirements.

An ethics committee may require the researchers to change the proposed plan for the research to meet with their requirements. For example, committee members may feel that patients need to be given more time to consider whether or not they wish to take part in a study. The research ethics service undertakes to process applications within 60 days, though in many cases it will happen more quickly, particularly through a fast track process for low risk studies known as proportionate review.

Blogger: Dorothy McCaughan

Needles in Haystacks: Part 1: what sort of needles are we looking for?

For a good many of us, searching for information on a topic involves typing a word or phrase into Google and scrolling through the millions of hits! Searching for studies to include in a systematic review is a rather more rigorous process!  This two part blog will give you a flavour of what is involved.

Searches in a systematic review must aim to retrieve all the relevant evidence about the research question and follow a specific methodology, so that, if necessary, the search could be reproduced.  However, they also need to be conducted within the budget, time and resources available for the project. As Information Specialist for the project this is my responsibility.

My first job was to devise a search strategy that would be capable of identifying all the relevant studies. The medical literature is vast and indexed across a considerable number of bibliographic databases so it is important to be clear what you are searching for. Searches in a systematic review are based on the research question which is composed of four elements. For this review:

• Population is people with knee instability related to a neuromuscular disease or central nervous system disorder
• Intervention is orthotic devices
• Comparator is any used
• Outcomes  are any investigated

The main challenges of this project are the number of diseases and conditions of interest and the number of possible orthotic devices. Studies can be indexed very differently on different databases so it is important to think of all the terms that could be used to describe the devices. The clinical experts on our Advisory Group provided valuable input on the names of all the possible relevant orthotic devices, so we are confident that we will locate the relevant studies.

Because there are many, diverse neuromuscular diseases and central nervous system conditions, we could possibly miss some if we were to list them in our searches, even with clinical advice. It would make searches very long, unwieldy and time-consuming. Instead we plan to concentrate on finding studies that describe using an orthotic device to deal with knee instability. For the same reasons, the comparators and outcomes have not been included in the search.

Blogger: Rocio Rodriguez-Lopez

A complex problem

In an earlier post I described what makes a review 'systematic'. In considering all the relevant research, we have to use transparent and replicable methods. Ideally, a reader of our review should be able to reproduce the review and get the same results. An important part of our methods is to clearly specify the nature of the research to be included in the review, our ‘inclusion criteria’.

Inclusion criteria are set out using an acronym called PICOS which stands for Participants, Interventions, Comparators, Outcomes and Study designs. In a review looking at a new drug to improve survival in breast cancer, for example, the participants are those with breast cancer, the intervention is the new drug, the comparator the currently prescribed drug, the outcome survival and usually the study design will be randomised controlled trials (often abbreviated to RCTs) as these are the most rigorous form of medical research.

Rarely, however are systematic reviews so straightforward.  The OKIS review is particularly complex as our inclusion criteria are very broad.  The participants are people with neuromuscular disorders of which there are many types. Neuromuscular disorders can involve the structure of the muscle cells in conditions such as Muscular Dystrophy the neuromuscular junction where the nerves and muscles meet such as Myasthenia Gravis and the motor nerves in the arms, legs, neck and face as in Charcot-Marie Tooth Disease to give just a few examples. This review also includes neuromuscular disorders arising from central nervous system causes such as Stroke, Multiple Sclerosis and Post-Polio Syndrome. The common element in all these disorders for this review is knee instability.

Another complexity in this review is that there is more than one type of orthotic intervention that may be used to help with knee instability. Some orthoses are fixed below the knee supporting the ankle and foot. Others are longer and cover the knee, ankle and foot. For severe weakness they can also include a hip band. Each one has its own acronym! The range of possible comparators is equally diverse. And, you’ve guessed it, the range of outcomes is wide and varies according to the conditions investigated. Pain, walking ability, usage of the orthotic and patient satisfaction are just some of the outcomes of interest. Furthermore, this topic area is at an early stage of research so we cannot restrict our study design inclusion criteria to RCTs as these have not been conducted in great numbers. We will, therefore, consider a range of study designs.

The complexity of this topic will be challenging at every stage but we now know the terms we need to use as we start to search for all the relevant research...but that will have to be the subject of another blog post!

Blogger: Debra Fayter

Designing the survey

One of elements of this project is to conduct a survey of healthcare professionals. This means that we will write a list of questions that we want the relevant health professionals to answer. The survey will ask questions about topics such as how patients get referred to them, how often they see patients and how they would judge if the orthotic is working for the patient.

Surveys can be conducted over the phone, face to face, be sent by post or electronically via the internet. We have chosen to use the internet and create a web based survey because it is a fast, simple and cost efficient way of reaching large numbers of people. We believe that there may be differences across the country in terms of what services are available to patients and we want to make sure that we find out what these differences are. By using a web survey, we can hopefully reach a range of health professionals all over the country.

The same questions are sent to everyone we want to join in the survey. The questions are formulated to try and make sure that everyone will understand them in the same way so the answers are consistent and provide the information we want to collect. This is the big challenge for any survey. To help us make sure we’ve got it right we will test the survey on a small number of health professionals. This will tell us what it’s like for participants to complete, including how long it takes, and allow us to make sure the questions are being answered in the way we anticipate.

The results of the survey will be the collective answers that we get. They should give us an idea of what orthotic services are provided to patients and how much NHS resources are used to provide these services. This will help us to estimate the cost of these services to the NHS.

Blogger: Joanne O’Connor

Keeping things in perspective

As researchers we spend a great deal of time initially reading around a topic and examining the published research evidence. In order to be answerable, research questions are usually very specific, as in this project where we are focussed on orthotic devices for knee instability in people who have a neuromuscular disease or central nervous system disorder. So when we get the opportunity to meet and talk with people our research is aimed at helping whenever possible we take it!

Such an opportunity was taken when we attended a really interesting meeting of the Yorkshire and Humber Muscle Group in York last Friday. When we got in touch with the group to circulate our advert for patient members to join our Steering Group they invited us along to the meeting. As well as having an opportunity to tell the group about our research we heard about the work that the group is doing in the Yorkshire and Humber region. This included reports from those providing support to people with neuromuscular conditions in the region, fund raising successes and possibilities, and advice on new self-managed funding arrangements. The meeting was hosted by the Muscular Dystrophy Campaign, who provide details about this group and similar ones all over the country on their website.

Some of the discussions at the meeting were a very strong reminder for us that in the context of complex neuromuscular conditions walking problems can be just one of many challenges people are dealing with. We are aware that our research is asking very focused and specific questions but the meeting has made us very mindful of the wider context in which our research question fits. This will be reflected in the discussion section of our final report.

Bloggers: Catriona McDaid and Alison Booth

What is qualitative research?

In addition to seeing what research evidence already exists about the use of knee orthotics by people with neuromuscular diseases, we are undertaking a qualitative study.

Qualitative research is used when we are interested in understanding how people make sense of their world and the experiences they have. Most qualitative research studies are small scale, focusing on a relatively small number of cases. However they provide depth and detail in the context of the chosen setting; this is sometimes referred to as ‘rich description’. Qualitative studies tend to focus on words rather than numbers. Qualitative research includes a range of methods, such as interviews, focus groups, direct observation, and analysis of texts and documents, or of audio/video recorded speech or behaviour.

For this project we will be undertaking interviews with people who have a neuromuscular disease and an orthotic device for knee instability. We are especially interested in finding out what people think are the most important measures of the success of an orthotic device – what is important to them as individuals. We also plan to run some focus groups with a small number of people who have the same neuromuscular condition. This will provide additional detail on outcomes and factors of interest across a number of common neuromuscular diseases.

Blogger: Dorothy McCaughan

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 

Seeking patient representatives in Yorkshire region

Can you help us in our research?

We are a group of researchers at the University of York carrying out research into the use of orthotic devices to help adults with neuromuscular conditions who have an unstable knee.

We are seeking two people who can bring the perspective of patients to our Project Advisory Group.

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 and started on 1^st April 2014. The group will meet three times over the year. We might also contact you occasionally in between meetings. We are 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

·                Are willing to share their opinions at a meeting and listen to the views of others

·                Are able to attend three Advisory Group meetings at the University of York– so live within easy travelling distance of York

You do not need to have any research experience just an enthusiasm and interest in the project. Information about the research and the team is available in our other blogs and pages.

If you would like to join us, please send an email to Catriona McDaid at kneeorthotics@gmail.com explaining why you would like to join the Project Advisory Group by Friday 25^th April.  You can also email Catriona if you have any queries about this role or would like further information.                       

Thank you for your interest.

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.