Learning from Patient Research Ambassadors (PRAs): Learning and Support survey May 2017. Report by: Jenny Preston, Karen Inns, Mana Golsorkhi Delivering research to make patients, and the NHS, better 1
Contents Page What is this report about? 3 Executive summary 3 Introduction 3 What we did 4 Key findings 4 Recommendations 16 Conclusion 17 Next steps 17 Acknowledgements 17 Find out more 17 Appendix 1 - Survey Appendix 2 - PRAI Operational Group Members 2
What is this report about? This report describes the findings from a survey sent out to Patient Research Ambassadors (PRAs) currently registered to receive news and updates about the Patient Research Ambassador Initiative (PRAI) to: Find out about their current role Gather their views on how they are supported to undertake their role Inform the clinical research network how PRAI works with partner organisations (NHS Trusts, Local Clinical Research Networks (LCRNs), Primary Care) to facilitate future support of PRAs Develop our understanding about the future support, involvement and engagement needs of PRAs Executive Summary A questionnaire to assess learning and support needs for PRAs was delivered via Survey Monkey between 5th December 2016 and 6th January 2017, receiving 29 responses from a possible total of 124 PRAs registered at the time (23%). Despite the low response rate the survey responses identified a number of issues facing PRAs including a number of training and learning needs. In order to address these needs the following recommendations (see page 16) were made: Broaden PRA engagement across diverse communications Establish local forums to support PRAs Provide learning to support the role of PRAs Capture, report and share the PRA experience Develop a systematic way to thank PRAs for their contributions Introduction The Patient Research Ambassador Initiative was set up following recommendations from a task and finish group convened within the NIHR Clinical Research Network in 2011. The group explored the potential role of patients, carers and lay people as ambassadors to improve patient access to clinical research in the NHS. It undertook a survey of existing practice and reported in 2012 with a recommendation for a small project to take forward and embed the initiative in the NHS. The Initiative s vision is to support a patient-centred research culture in the NHS. It recognises that in terms of research, there is a need to improve the engagement of patients, carers, and members of the public. The project is steered by the PRAI Operational Group and holds that patients, carers and lay people who have experienced research can often be the best Research Ambassadors in their local NHS care organisation. What is a Patient Research Ambassador? A Patient Research Ambassador is someone who promotes health research from a patient point of view. They could be a patient, service user, carer or lay person who is enthusiastic about health research and willing to communicate that to other patients and public as well as healthcare professionals. 3
They can help ensure that people using local NHS care have the best opportunities and choices about taking part in research studies. Some PRAs will want to speak and act further to improve the quality and conduct of research. What we did In order to assess the learning and support needs of PRAs a questionnaire was developed by the PRAI Operational Group and distributed via Survey Monkey with responses collated between 5th December 2016 and 6th January 2017. In total 29 responses were returned from a possible total of 124 PRAs registered at the time. Despite a response rate of 23%, which may have been due in part to being delivered over the Christmas period, it was felt that there was sufficient data on which to draw conclusions and make some initial recommendations, except perhaps in terms of geographical spread (see Chart 5.) The questionnaire, shown in appendix 1, was divided into three sections: Section 1 About you Section 2 About your PRA activities Section 3 Support Key findings Section 1 - About you The first section of the survey asked participants about the main reason they had registered with the Patient Research Ambassador Initiative and what they considered to be their title. Chart 1 highlights that just over 34% registered to hear of local and national opportunities to get involved/engaged in research and 31% registered to raise awareness of research with others. Other reasons for registering were to liaise with other Patient Research Ambassadors and to share their experiences of being involved in research, to hear of local and national opportunities to get involved/engaged in research and to help improve access to research. Two respondents selected all the options as the reasons they had registered with PRAI. 4
Chart 1: Reasons for registering with the Patient Research Ambassador Initiative Chart 2: Patient Research Ambassadors Identity Chart 2 highlights that the majority of participants (36%) considered themselves to be Patient Research Ambassadors; 25% ticked other such as, patient leader, hospital volunteer, Patient and Public Involvement/Engagement coordinator, pharmacy technician; 21% considered themselves advocates and 14% as lay representatives. Chart 2 - Patient Research Ambassadors Identity 5
In section 1 of the questionnaire we also collected data on demographics to include age and ethnicity; links with NHS Organisations or NIHR Local Clinical Research Networks, current role and training received to undertake their Ambassadorial role within the organisation they are connected to. Please see the charts to follow. Chart 3: Age of Patient Research Ambassadors Chart 3 highlights the age group of participants. As you can see just under 50% are between the ages of 45-64 years old, 24% are between the ages of 65-79 years old. Chart 3: Age of Patient Research Ambassadors Chart 4: Ethnicity of Patient Research Ambassadors Chart 4 highlights that just over 79% of participants were White: English, Welsh, Scottish, Northern Irish, British. 6
Chart 4: Ethnicity of Patient Research Ambassadors Chart 5: Top four regional locations where Patient Research Ambassadors are based Chart 5 highlights that of the Patient Research Ambassadors who responded to this survey, 15% are based in the Yorkshire and Humber area, 15% in the Eastern area, 12% in the West Midlands and 12% in Wessex. Chart 5: Top four regional locations where Patient Research Ambassadors are based Chart 6: the association of Patient Research Ambassadors with an NHS Organisation or Local Clinical Research Network (LCRN) Chart 6 highlights the association of the responding Patient Research Ambassadors with an NHS Organisation or Local Clinical Research Network (LCRN): 48% of PRAs are already 7
working with NHS organisations, 53% would like to work with their LCRN, 47% ticked unsure. Chart 6: Association with NHS Organisations/LCRNs Chart 7: Have PRAs received training to undertake their role? Chart 7 highlights that over 60% of participants had not received training to undertake their role as a PRA compared to just over 39% who had. Those who had received training included the following examples of organisations and/or courses they had received support from: The National Institute for Health and Care Excellence ( NICE), National Institute for Health Research (NIHR), The National Cancer Research Institute (NCRI) Consumer member training, Building Research Partnerships,National Institute for Health Research (NIHR) West Midland Patient, Public Involvement & Engagement ( PPIE), NHS England, Local Clinical Research Network (CRN), NIHR national conferences, NIHR Research for Patient Benefit Programme (RfPB), Evaluation, Trials and studies Coordinating Centre (NETSCC), Online training, Massive Open Online courses (MOOC), Care Quality Commission (CQC), Patient Leadership Coaching, Communication with local clinicians and Contract Research Organisation (CRO) staff. 8
Chart 7- Have PRAs received training to undertake their role? Section 2 About your PRA activities This section collected data about current PRA roles. Chart 8 - Types of PRA activities Chart 8 highlights different types of activities PRAs had been involved in, which included approximately 50% speaking at patient groups, approximately 50% are lay members of an NHS Trust Board, or other similar board, approximately 50% discuss research with family, friends, acquaintances. Over 40% ticked other, to include speaking to graduate nurses, consumer voice on trials, developing local lay groups, writing weekly reports on activities for the local NHS Trust and quarterly updates for the regional CRN. Other activities that PRAs have participated in include: Speaking to outpatients, encouraging them to get involved in research studies, distributing information on current studies, consenting patients onto the Sheffield Diabetes and Endocrinology Research Database Writing occasional strategy and review papers on the operation of the PRA initiative in the Trust. NIHR/CRN level events and meetings, university based lay representation, research group related activities e.g. project co-applicant Lay representative at European Medicines Agency Reviewer and panel member in NIHR progs,lay member of research management committees, AHSN Developing local lay research group and connecting national research activity to local development Advisory work for National Cancer Research Institute 9
Chart 8 - Types of PRA activities Chart 9: Who do you interact with in your role? When participants were asked who do you interact with in your role, chart 9 highlights that approximately 40% interacted with university research staff, NIHR Clinical Research Network (NIHR) staff, and outpatient clinics. 35% interacted with medical consultants, and 15% worked with their GPs. 10
Chart 9: Who do you interact with in your role? Section 3 - Support In section 3 the focus was on asking questions about the support PRAs currently receive or would like to receive in the future. When asked who currently supports them in their role Chart 10 highlights that 40% indicated that they receive no support at all, 40% receive support from LCRN Patient and Public Involvement/Engagement (PPIE) Leads, and 15% receive support from their local Research & Development manager Chart 10 - Who is the main person who supports you in your Patient Research Ambassador role? 11
Chart 11: What kind of support do you receive at the moment? Chart 11 highlights that of those that received support, just over 30% received mentor advice and support, just under 30% receive support from online resources, and just over 20% receive support via regular meetings. Chart 11 - What kind of support do you receive at the moment?(type of support) Chart 12 - What type of support would you like to receive? When asked what type of support would they like to receive (Chart 12) 80% would value meeting and working with other PRAs, over 60% would value meeting and working with people working locally and 60% would value learning and training opportunities. 12
Chart 12 - What type of support would you like to receive? Chart 13 - Which of the following would you find helpful to address your learning needs? In order to address PRAs learning needs (Chart 13) highlights the top three activities to address PRA learning needs, which includes just over 70% saying they would like opportunities to work with other PRAs on particular projects, 66% would like updates, information, and advice exchange with researchers and 65% would like updates on new research opportunities. 13
Chart 13 - Which of the following would you find helpful to address your learning needs? Chart 14 - How would you like to access learning in the future? In terms of how PRAs would like to access learning (Chart 14) just under 80% would like to attend events, meetings with other PRAs, 70% would like to have face-to-face meetings with others and slightly under 70% would like to have online training to meet their learning needs. Chart 14 - How would you like to access learning in the future? 14
Chart 15 - How is your experience as a Patient Research Ambassador captured? We asked PRAs about how their experiences of promoting and raising awareness of research was captured. 46% of PRAs felt their experience was not captured at all as opposed to only 19% who felt their experience was captured. Of those who felt their experience was captured, PRAs said this was mainly via surveys, regular reports, reflective papers and through social media and press. Chart 15 - How is your experience as a Patient Research Ambassador captured? Chart 16 - How are you thanked for being a Patient Research Ambassador? The final question addressed how PRAs are thanked for their contributions Chart 16 highlights that 34% of PRAs were thanked for their contributions (verbally by their manager/mentor or postcards) compared to 34% who did not receive any thanks at all. 15
Chart 16 - How are you thanked for being a Patient Research Ambassador? Recommendations The findings above were collated and discussed at the PRAI Operational Group at which the following recommendations were made: Recommendation 1 - Diversity & Inclusivity Recommendation 2 - Local Patient Research Ambassador Forums Recommendation 3 - Learning Increase PRA diversity by developing a communications plan that will include communication materials and case studies to facilitate local activity to broaden engagement across diverse communities. Establish local forums to support PRAs in their role, providing opportunities to meet other PRAs and to share learning and good practice. Learning should include induction to the role and context, and highlight current available resources across organisations such as, INVOLVE and the NIHR (e.g. Building Research Partnerships, NIHR Learn Zone, Massive Open Online Course:Improving Healthcare through clinical research, EUPATI etc.) 16
PRA experience of learning should be evaluated. Recommendation 4 - Capturing and reporting Patient Research Ambassador Experiences Recommendation 5 - Thanking Patient Research Ambassadors for their contributions The Patient Research Ambassador Initiative should further develop systems to support local capture, reporting and sharing of PRA experience of undertaking their role. The Initiative should develop guidance and resources supporting local organisations to routinely thank PRAs for their contributions. Conclusion The aim of the Patient Research Ambassador Initiative is to support a patient-centred research culture in the NHS. This survey, albeit with a low response rate, has identified a number of issues facing PRAs and suggested some training and learning needs. In order to achieve this the CRN, working in partnership with key partners and stakeholders, should continue work to support the development and embedding of tools, guidance and support as outlined in the above recommendations to equip Patient Research Ambassadors to undertake this important role. Next steps The report will be disseminated widely amongst all PRAs and key stakeholders including PPIE staff within the NIHR Local Clinical Research Networks and wider NIHR colleagues. A summary of the report will also be shared. The PRAI Operational Group will address key recommendations in the context of the Project plan and resources available, by working in partnership with stakeholders and Patient Research Ambassadors to address their learning and support needs. Acknowledgements We would like to thank all the Patient Research Ambassadors who completed the survey and members of the PRAI Operational Group (Appendix 2) for their further advice. Find out more More details about the Patient Research Ambassador Initiative: www.nihr.ac.uk/patient-research-ambassadors Register your interest in getting involved: www.nihr.ac.uk/patients-and-public/how-to-join-in/patient-research-ambassadors/ Follow us @NIHR_PRAI #researchambassador Summary version of the report 17
A summary version of the report will be available shortly. 18
Appendix 1 - Patient Research Ambassador Experiences and Learning/Support Needs Questionnaire
Patient Research Ambassadors experiences & learning/support needs Section 1: About you Dear Patient Research Ambassadors. We would like to gather your views about your current role and how supported you feel to undertake your role. The survey is aimed at Patient Research Ambassadors (PRAs) who are currently registered to receive news and updates about the Patient Research Ambassador Initiative (PRAI). The information you provide will be anonymised and used to inform us about how the Patient Research Ambassador Initiative works with its partner organisations to facilitate future support, involvement and engagement needs of Patient Research Ambassadors. All responses are anonymous, however if you do share your identity with us this information will be held confidentially by the Patient Research Ambassador Initiative team only. The survey should take no longer than 10 minutes to complete. We will comply and analyse the feedback and communicate the general findings via the Patient Research Ambassador Initiative website. The survey is open until the 6th January 2017. Thank you for participating in our survey your feedback is really important. Q1) Your name (optional) Q2) Your age group (years) Q3) Your ethnicity Q4) Your regional location. Other (please specify) 1
Q4a) Which hospital, GP practice do you work with (if any). If none please state none. Q4b) If you answered none to 4a, would you like to work with your local hospital, GP practice, NHS Trust or your (Local Clinical Research Network) LCRN? Yes No Unsure Q5) How did you hear about Patient Research Ambassador Initiative? Through a personal contact Through a LCRN Through my local hospital From my GP Through a charity (Please specify in Q5a) Other (Please specify) Q5a) If selected charity, please specify the name of charity. Q6) What was the main reason for registering your interest with Patient Research Ambassador Initiative? To liaise with other Patient Research Ambassador's To hear of local and national opportunities to get involved/engaged in research To share my experiences of being involved in research with others To help raise awareness of research with others To help improve access to research for others Other (please specify) 2
Q7) Not everyone associates themselves as being a Patient Research Ambassador what would you consider your main title to be? Patient Representative Lay Representative Carer Advocate Other (please specify) Q8) Have you received any training to help you in your role as Patient Research Ambassador so far? Q8a) If answered yes to Question8, what training have your received? Patient Research Ambassadors experiences & learning/support needs Section 2: About your activities as a PRA 3
Q9) What types of activities are you involved in in your role as a Patient Research Ambassador? (Please tick all that apply) Distributing promotional materials (e.g. to GP surgeries, care homes, hospitals ). Informal discussion with family, friends and acquaintances. Attending local charity meetings and events. Speaking at social groups and events (e.g social societies, hobby groups). Speaking at patient groups (e.g. in GP surgeries, patient advisory & support groups) Running an exhibition stand at conferences and events Speaking at meetings and events (e.g. local and national conferences) Being interviewed for local and national press Being interviewed for local and national radio and television Writing for print (e.g. articles for newspapers, journals, magazines) Writing online (e.g. blogs, websites) Social media activity (e.g Facebook, Twitter) Lay member of a NHS Trust Board, or other similar Board (R&D, Patient Partnership Board etc.) Other (please specify) Q10) Which of the following do you mainly work/interact with in your role? (please tick all that apply)? GP practice Local Research Network staff NHS Trust Volunteer Programme Medical consultant, specialist Primary Care R&D Office Other (please specify) Patient Research Ambassadors experiences & learning/support needs Section 3: Supporting you in your Patient Research Ambassador role 4
Q11) Who is the main person who supports you in your role? Other (please specify) Q12) What kind of support do you receive at the moment? (please tick all that apply). Training Mentor advice and support Regular Meetings Paper resources to support discussions with others Online resources to support discussions with others I receive no support Other (please specify) Q13) What kind of support would you most value in the future to help you in your role? (please tick all that apply) Learning events and training (e.g. introduction to research; talking with confidence about research with others, social media training etc) Meeting/working with other Patient Research Ambassadors Meeting/working with people locally Other (please specify) 5
Q14) Which of the following would you find helpful to address your learning needs? (Please tick all that apply) Introduction to research How research can benefit patients, public Talking with confidence about research with patients, public, healthcare professionals Building networks to get your message across Understanding the difference my activity is making Updates on new research Opportunities to work with other Patient Research Ambassadors on particular projects Updates, information and advice exchange with other Patient Research Ambassadors Updates, information and advice exchange with Researchers Information, advice and support to help access wider learning (courses, meetings, events ) Other (please specify) Q15) How would you like to access learning in the future? (please tick all that apply) Face to face with others At events, meetings with other Patient Research Ambassadors Online Newsletters Email Other (please specify) Q16) How is your experience as a Patient Research Ambassador captured? (Please tick all that apply) Experience survey from those you work with (trust, hospital, GP) Discussion with mentor Discussion with volunteer manager My experience is not captured Other (please specify) 6
Q17) How are you thanked for being a Patient Research Ambassador?(Please tick all that apply) Thank you postcard, certificate Verbally by manager, mentor I do not receive any thanks Other (please specify) Q18) Please let us know if there is anything else you would like to comment upon that you feel has not already been addressed in the questions. Q19) If relevant, would you feel able to share the most significant impact you feel you have made as a Patient Research Ambassador. Thank you for taking the time to complete the survey. 7
Appendix 2 - Patient Research Ambassador Initiative Operational Group Membership Member Dr William van t Hoff (Chair) Chelsea Drake Jenny Preston Zoe Gray Gary Hickey 2 Patient Research Ambassadors (4 members, 2 to attend on rotation) Dr Virginia Minogue Louise Small Mana Golsorkhi Karen Inns Tracy Gregg Julia Simister Francine Jury Jennifer Allison Jo Burns Role NIHR Clinical Research Network, CD for NHS Engagement NIHR CRN Head of Communications NIHR CRN PPIE Lead PRAI Project Manager INVOLVE Director INVOLVE - Senior Research Officer Keith Wilson David Chuter Roger Leek Simon Stones NHS England: Research lead, Commissioning Strategy Directorate NIHR CRN Stakeholder Engagement Administrator NIHR CRN PPIE Support Officer NIHR CRN PPIE Priority Lead Lead for Learning NIHR CRN Communications Manager NIHR Research Delivery Manager & LCRN PPIE Lead Citizen Scientist Project Manager NIHR CRF, Senior Nurse Manager JDR Programme Manager
NIHR Clinical Research Network (CRN) 21 Queen St LEEDS LS1 2TW Tel: 0151 282 4709 Email: crnppie@nihr.ac.uk Web: www.nihr.ac.uk