Levels of involvement Consultation Collaboration User control THEME 2: Unit 5 - Part G Levels of involvement in research can range from: Consultation Collaboration Trainer Notes PRESENTATION: There are 3 main levels of involvement in research and development. If you are consulted you are asked for your opinions or views on a matter. They may be taken into account but there is no guarantee this will be the case and you may not know what happens the research project. If you are collaborating, then you are an active partner in the research process and you share or are delegated some of the responsibilities. Users and carers share decision making and their opinions are given equal weight with health and social service staff. They usually find out what happens in the whole process of the research and development project. If there is user control then users and carers lead the research. they may ask health and social service staff to do specific tasks for them, but the overall responsibility for the project lies with the users and carers. User control 1A

What is evaluation? THEME 2: Unit 5 - Part G Evaluation is work to explore “the value, merit, worth or significance of the thing in question” We evaluate all the time We evaluate research to see if: the aims of the research have been fulfilled they have been done well it helps tell us more about a specific issue the results are accurate the results suggest a change in practice/services Trainer Notes PRESENTATION: Examples of evaluation in our daily lives include: What the weather is like in the morning and what we should wear that day The best route to take somewhere so you miss the worst traffic or go the most scenic and pleasant way Which brand of tomato sauce is the best value for money or the most tasty Users can get involved in evaluating research in a number of ways. They can either become a: systematic reviewer as part of the Cochrane collaboration, peer reviewer of systematic reviews, or review a research topic to decide upon clinical guidelines within their local trust (or nationally with the National Institute for Clinical Excellence, NICE). 1B

THEME 2: Unit 5 - Part G Systematic Reviewer Identifies a health condition or treatment that needs to be reviewed Brings a team together of health and social care professionals and users and carers with a knowledge of the condition Searches for studies (published and unpublished) Carries out the review - assesses the design, brings the information together and analyses the data Publishes the review so that many people can read it An example of this type of systematic reviewer is the Cochrane Collaboration Trainer Notes PRESENTATION: A systematic reviewer is part of a group of people with knowledge and experience of a given topic that looks at the research evidence produced and evaluates and summarizes it. Present above points 1C

Peer Reviewing Systematic Reviews THEME 2: Unit 5 - Part G Peer Reviewing Systematic Reviews Does the review need to be done? Does the review use appropriate language for the public and healthcare professionals? Are the team the most appropriate to do it? Does it consider all people? Are the outcomes important to users and carers? Has the reviewer considered potential harm as well as benefits? Trainer Notes PRESENTATION: As well as carrying out systematic reviews the Cochrane Collaboration asks users to peer review systematic reviews and protocols. They send out draft reviews and protocols to people with an interest in the subject. The protocols are written descriptions of how the reviewer plans to carry out the review. The systematic review group consider the suggestions they receive and sometimes make changes to the review. Peer reviewers are then able to review this again prior to final publication. The questions that someone doing a peer review of the systematic review might ask include: Present above points 1D

To produce clinical guidelines THEME 2: Unit 5 - Part G Can be done locally or nationally Identifies a health condition or treatment that needs a clinical guideline to help clinicians Brings a team of health and social service professionals and users and carers together who have knowledge of the condition or its treatment Searches for studies (published and unpublished) Reviews the research and make recommendations Publishes guidelines on the recommended care Trainer Notes PRESENTATION: Research also needs to be evaluated in order that clinical recommendations (guidelines for practitioners) can be made. This is either done locally within the trust or nationally with the National Institute for Clinical Excellence (NICE). Within each organisation there is a protocol for how to produce clinical guidelines. It usually has a similar process to a systematic review in that it: Present above points 1E

Opportunities for user involvement in evaluating research THEME 2: Unit 5 - Part G Opportunities for user involvement in evaluating research There are potentially many areas where users can become involved with evaluating research – you could be a: Member of the Cochrane Collaboration Systematic Review Group Member of the Cochrane Collaboration Review Group Member of the NICE Clinical Guidelines Group Member of a local trust Clinical Guidelines Group Trainer Notes PRESENTATION: Present the above points 1F

Why is user involvement in evaluating research important? THEME 2: Unit 5 - Part G User involvement in evaluating research and development is important because consumers: Offer a ‘reality check’ Bring an ‘antidote to jargon and pomposity’ Help make reviews relevant to and readable for everyone, not just healthcare professionals Raise new questions and topics that are relevant to users and carers Trainer Notes PRESENTATION: Present above points. 1G

Example: The Cochrane Collaboration Peer Reviewer THEME 2: Unit 5 - Part G Example: The Cochrane Collaboration Peer Reviewer Purpose of doing peer review: Assess systematic reviews to ensure the systematic review is: appropriate unbiased carried out thoroughly has considered user perspective Trainer Notes PRESENTATION: We are going to look at an example of user involvement within evaluating research. First I will present the main points but you also have the description in a handout and that has more detail. After this you will work in two groups – each group will discuss the example. You will decide how good you think the user involvement activity was? You will also see what you can learn that will be useful for your own situation. The Cochrane Collaboration peer reviewer is part of a team that examines and assesses a systematic review of a specific condition/treatment. The review team aims to: Present above points. 2A

Example: The Cochrane Collaboration Peer Reviewer THEME 2: Unit 5 - Part G Example: The Cochrane Collaboration Peer Reviewer How users get involved: Identify that a review has not already been carried out in an area that interests them or they think is important Nominate to join the peer review panel Attend training in peer reviewing Trainer Notes PRESENTATION: Users usually choose to get involved by volunteering – they may have heard about the Cochrane Collaboration, found them on the Internet or been told about them by health and social service staff. Present above points. 2B

Example: The Cochrane Collaboration Peer Reviewer THEME 2: Unit 5 - Part G Support provided to user consultants: Online training resources to teach users in peer reviewing (Open College) Join the Cochrane Consumer Network ‘Buddy system’ – this is where you buddy up with another reviewer (user, carer or health and social service staff member) and can talk with them about what you are doing Trainer Notes PRESENTATION: Present above notes 2C

Example: The Cochrane Collaboration Peer Reviewer THEME 2: Unit 5 - Part G Level of influence or decision-making: This is similar to that of a health or social service staff member who is a peer reviewer Full member of the review team Partners in the review process Give guidance on the user perspective Trainer Notes PRESENTATION: Present above notes 2D

Example: The Cochrane Collaboration Peer Reviewer THEME 2: Unit 5 - Part G Activities that happen: The team: Assesses the plan of the review Identifies and negotiates review tasks that members carry out Assesses the complete review for: language relevance and importance to users potential benefits and harm Develops a final version Trainer Notes PRESENTATION: Present above notes 2E

Example: The Cochrane Collaboration Peer Reviewer THEME 2: Unit 5 - Part G Strategies for success: online training and support for users (buddy system for mentoring and debriefing) equal partnership between users and professionals providing an opportunity to comment on research evidence which is usually only made available to professionals Trainer Notes PRESENTATION: Present above notes 2F

Example: The Cochrane Collaboration Peer Reviewer THEME 2: Unit 5 - Part G Problems that could occur: insufficient knowledge of the research process to enable to users’ voices to be heard insufficient knowledge of user involvement by the professionals insufficient numbers of users represented on the group insufficient support and mentoring for users and carers so they can participate as fully as possible Trainer Notes PRESENTATION: Present above notes 2G

Thinking about practical issues – what does it mean for you? THEME 2: Unit 5 - Part G Number of user consultants involved Costs of involvement What is the user consultant role description? Being prepared for the role At what stage are user consultants involved? Office space or equipment Number of methods for gaining user involvement used Trainer Notes PRESENTATION: When you are thinking about the practical issues of involvement there are some key areas that you should check through. You will find that some ideas fit with your expectations for support: Present above points. Note to Trainer: If this group has done Core 2 – Unit 2: Part C then they have covered this material. Remind them that they have already discussed these issues. If the group has not done this part of the training it may be useful to go back and do some of that with them. 3A

Thinking about practical issues – what does it mean for you? THEME 2: Unit 5 - Part G How much information you receive Handling confidential information Training Mentoring Your connection to a network of other users, carers, the public Debriefing opportunities or support Opportunity to reflect on what you learn Dealing with personal difficulties Trainer Notes PRESENTATION: Present above points, then say: Now we need to think about which of these may present some practical issues if you decided to get involved in evaluating research. 3B