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.
  

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

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.

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.