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Keywords:

  • Data linkage;
  • health-related research;
  • e-records research

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Aim of this study
  5. Methods
  6. Results
  7. Discussion
  8. Future work
  9. Conclusions
  10. Acknowledgements
  11. References
  12. Links to videos

We describe and reflect on the work of a Consumer Panel for a data linkage research unit in Wales, and show how the members are inputting into plans for the future. Our work is centred on conducting health-related data linkage research using anonymously linked, routinely collected data from across Wales via the Secure Anonymous Information Linkage system. In recognition of the importance of including patients and the public in health-related research, we have established a Consumer Panel to strengthen this voice in our work, and there are currently 10 members (4 men and 6 women) from across Wales, with a range of health-related areas of interest. A review of Panel activities was carried out after the first year, and all members were invited to provide their views via a questionnaire survey using structured and free-text responses. Initial feedback, obtained after the first meeting, was tentatively positive, and the questionnaire survey identified practical measures for improvement and future work. We have found the Consumer Panel to be a valuable addition to our work in the rapidly growing area of data linkage research. The views of Panel members provide a positive outlook and a fresh, and sometimes unexpected, perspective on various issues. The lessons we have learned, and our experience of involving the Panel in various aspects of our work, may be of value to others seeking to work with consumers in data linkage research, to researchers in general and to consumers themselves.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Aim of this study
  5. Methods
  6. Results
  7. Discussion
  8. Future work
  9. Conclusions
  10. Acknowledgements
  11. References
  12. Links to videos

The Secure Anonymised Information Linkage (SAIL) system was established to conduct and support health-related data linkage research using anonymously linked, routinely collected data from a range of sources. The data are brought together in the SAIL databank and it contains a wealth of anonymous data sets, including: primary care [general practitioners (GP)], hospital (Patient Episode Database Wales), education (National Pupil Database), screening services (bowel, breast and cervical cancer), child health (National Community Child Health Database), various registers (such as the Welsh Cancer Intelligence Surveillance Unit cancer registry and the Congenital Anomaly Register and Information Service for Wales), plus others. Although the data are anonymous, we are able to link them at the individual level while retaining privacy, so that the linked data represent a rich resource for research (Ford et al., 2009; Lyons et al., 2009). The data are being used in many types of study, including clinical trials, observational and epidemiological studies, and methodological developments (Ford et al., 2012; Roberts et al., 2012; Rodgers et al., 2012; Snooks et al., 2012; Brophy et al., 2013).

Consumer involvement is an important part of many kinds of research and there are various organizations to support researchers in including patients and the public in their work [e.g. INVOLVE 2012 (England), Involving People 2012 (Wales) and Involving People in Research 2012 (Australia)]. The published literature abounds with studies that include consumers in many research areas and funding bodies are increasingly requesting a public engagement plan in research proposals, reviewing how they can involve consumers in their own work, and how consumers are engaged in the studies they support (UKCRC, 2009; Petit-Zeman et al., 2010; Medical Research Council, 2012a). Furthermore, there is a growing wealth of literature on consumer health, such as using technology to promote healthy eating among children (Bech-Larsen and Gronhoj, 2013), interpreting the needs of vulnerable health consumers (Hare et al., 2013), issues affecting aging consumers (Perry and Wolburg, 2011) and consumer perceptions of over-the-counter vs. prescription medications (Bower et al., 2013). Listening to the consumer voice is increasingly being recognized as important across a broad range of public-facing services. For example, the UK has a financial services consumer panel to represent the public interest in policy development (FSCP, 2013), and a similar arrangement in legal services (LSCP, 2013). A recent editorial highlighted the importance of partnering with patients in healthcare delivery, and includes the establishment of a panel of patients and doctors to take this forward (Godlee, 2013).

Data linkage research is still a fairly new area with relatively few well-established units: as well as the SAIL system in Wales, there are units in Australia, Canada, Scotland and England (Kendrick and Clarke, 1979; Gill, 1997; Kelman et al., 2002; Roos et al., 2008; Hertzman et al., 2013). However, it is a rapidly growing area with new units being established and existing work being extended. For example, we have recently become one of four Health e-Research Centres of excellence in the UK, and this is called the Centre for the Improvement of Population Health through E-records Research (CIPHER), along with one in Scotland and two in England (Medical Research Council, 2012b). As well as this, the data linkage infrastructure is being extended across Australia (Boyd et al., 2012). In common with the existing units, these new and extended structures also have public engagement in their scope, and it is receiving increased attention at many levels. For example, a public engagement workstream has been established across the network of centres of excellence, and the UK Economic and Social Research Council (ESRC) has been leading an Administrative Data Taskforce with a workstream on public engagement in data linkage research (ESRC, 2012).

SAIL was established in 2006, and the main focus for our first 3 years was necessarily placed on creating the infrastructure, acquiring core data sets, and developing the technology and security procedures to set up the SAIL databank. Work in these areas is continual, but as the data were increasingly being requested for research, we set out to establish a Consumer Panel as part of our public engagement plan. Even though the data we use are anonymous, there are many issues to consider in the use of large-scale data for research. These include public views on data protection, whether proposed data uses are appropriate, and how to engage with, and convey information about data, to the public. Our guiding theoretical framework was based on the increasing recognition of the importance of including the consumer voice across public life, as outlined above, and accepted principles for public engagement, such as those used by the Policy, Ethics and Life Science Research Centre (PEALS, 2013). These principles, applied in the context of our Consumer Panel, include: involving the consumers in setting the terms of reference; including consumers with different interests and levels of knowledge; supporting the learning needs of the members; providing a diversity of information sources and formats; providing a mechanism for consumers to influence strategic management; providing opportunities for the consumers to identify strategies for learning and development; and monitoring how the views of those involved in the participatory process have been taken forward. Having run the Panel for a year, we have carried out a review of the activities in which the Panel have taken part and have conducted a questionnaire survey of the members to obtain their feedback and ideas for the future.

Aim of this study

  1. Top of page
  2. Abstract
  3. Introduction
  4. Aim of this study
  5. Methods
  6. Results
  7. Discussion
  8. Future work
  9. Conclusions
  10. Acknowledgements
  11. References
  12. Links to videos

The aim of this study is to describe how we set up a Consumer Panel for a data linkage research centre and how the Panel operates, and to reflect on the work of the Panel in its first year, with the feedback we obtained via a survey of the members, to feed into plans for the future. It is well known that there are many research studies and organizations that have Consumer Panels, and therefore, we are focusing mainly on the more specific elements relevant to data linkage research. We aim to use the findings of this study to help us understand the Panel members' views and needs, and help us to focus our public engagement work in the right direction from their perspective. We acknowledge the limitations of this study due to the small sample size (10 consumers) at the outset. Even so, we envisage that the findings may also be useful to other data linkage research units, to researchers more generally and, of course, to consumers considering whether to become involved in research-related activities, and data linkage research in particular.

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Aim of this study
  5. Methods
  6. Results
  7. Discussion
  8. Future work
  9. Conclusions
  10. Acknowledgements
  11. References
  12. Links to videos

Panel constitution and operation

Expressions of interest for Panel membership were obtained from various sources during the summer of 2011. These included Involving People, an existing consumer involvement group for chronic conditions, research project teams and personal communications at conferences. These were followed up with invitations to an interview with two SAIL staff where each person was asked about their experience (if any) of being part of a committee, a research project or a Consumer Panel; their areas of interest; their research knowledge and experience (if any); and their knowledge of the issues around the use of data for research.

In the initial meeting in November 2011, the Panel participated in developing terms of reference, elected a Chairperson from among the consumers and decided to meet quarterly. As well as the consumer members, the Panel is regularly attended by three to four SAIL staff members, with additional staff/researchers being invited for particular meetings. Agenda items are discussed in an open manner to encourage full participation and further consultations are occasionally conducted by email.

Involvement of panel members in other structures

As well as the Consumer Panel, members are also invited to take part in other SAIL structures. This includes: the SAIL Advisory Board, which is a strategic management committee with government, public service and commercial organization stakeholders; the Information Governance Review Panel (IGRP), which is an independent group that reviews IG compliance in all research proposals to use SAIL data (Ford et al., 2009), and ad hoc work such as the interview panel for a Public Engagement Officer post. Additional opportunities such as these are generally discussed in the meeting and then circulated by email for expressions of interest and nominations.

Panel activities

The Panel has been involved in a variety of activities during the first year. There has been a series of informative/training presentations given by SAIL staff. These have been designed to introduce the Panel to data linkage research and the various issues that surround it in lay terms, and have included: an introduction to the work of SAIL; the IG procedures that are used; working with anonymous data and linked data for research; and how the work of SAIL fits into the wider context. When we were applying to become a centre of excellence, we consulted with the Panel on the development of the public engagement plan. Following the success of the application, the Panel discussed their priorities for the Public Engagement Officer post (to be recruited shortly). The Panel has reviewed different types of information designed for the public. This included a leaflet entitled ‘Your health records save lives What? How? Why?’ published by the UK Clinical Research Collaboration (2011). It explains the importance of using health data in research, and it has been piloted in GP surgeries. As well as this, the Panel viewed two short videos for the public, one on e-health produced by the E-health Industries Innovation Centre based at Swansea University, and one on data linkage produced by the South Australia/Northern Territory data linkage unit. Links to the videos are provided at the end of this article.

Panel feedback and survey

Following the first Panel meeting, Involving People sought some initial feedback from three people they had helped to recruit to the Panel. There were asked:

  1. to describe briefly what they did as part of their involvement;
  2. whether the involvement met their expectations;
  3. to tell us about the good and the bad aspects of being involved;
  4. what difference they thought their involvement had made.

After 1 year, we conducted a bespoke questionnaire survey of the Panel members using a combination of structured and free-text responses. The purpose of this was to evaluate the first year and help guide plans for the future. The survey was designed to be anonymous and it was sent by post. But in case members preferred to complete a copy electronically, it was also emailed to them with the facility to return it to someone acting as a trusted third party (or go-between) who would pass on the responses anonymously. At the deadline for responses, the survey was re-issued by email and posted as a reminder.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Aim of this study
  5. Methods
  6. Results
  7. Discussion
  8. Future work
  9. Conclusions
  10. Acknowledgements
  11. References
  12. Links to videos

Panel constitution and operation

Ten people were appointed to the Panel: four men and six women, with an age range from 30 to 70, from across many counties of Wales providing a geographic spread (Swansea, Carmarthenshire, Monmouthshire, Flintshire, Rhondda Cynon Taf, Neath/Port Talbot, Conwy). The majority are white British but with representation from at least one other ethnic group. The Panel members have a wide range of experience, including: in the health service, social services, community health councils, local authorities, councils, voluntary groups, patient/hospital support groups, research project steering groups, hospital stakeholder groups, Involving People and other public engagement groups. They also covered a variety of areas of interest, including: adult well-being and health, older people's health, child health, diabetes, cardiovascular, arthritis, epilepsy, mental health, education and ethnicity.

The agreed terms of reference of the Panel are summarized as follows:

  • To act as an advisory panel to SAIL on issues in data linkage research from the perspective of service users and carers.
  • To advise on how best to engage with the public/service users and carers, including reviewing information to make sure it is appropriate, and what sort of routes/methods to best reach people.
  • To advise on how to recruit people to project groups, e.g. steering groups. This could be as members of those groups themselves, or suggesting other sources.
  • To provide SAIL with the service user/carer view on data protection issues.
  • To discuss proposals for projects and ideas for possible projects.
  • To feed into existing studies, e.g. on steering groups.
  • To act as advocates for SAIL.

Involvement of panel members in other structures

Two Panel members, plus a third to act as a deputy, were appointed to the SAIL Advisory Board. Initially, one member was appointed to the IGRP, but the Panel requested an additional representative and this was duly increased to two members. There will be at least one Panel member involved in the interview process for the Public Engagement Officer. For these additional appointments, it was necessary for us to review the skills of the members with respect to the role. For example, the IGRP members need some knowledge of research. Even so, we supported the members taking up the roles and provided training on the proposal review process.

Panel activities

We aimed to convey information clearly and without jargon in the presentations given by SAIL staff. They were well received and most members found them clear and informative. However, some questions raised afterwards by the Panel showed how difficult it can be to present information on health informatics effectively to a lay audience.

The Panel provided helpful input into the outline public engagement plan during our centre of excellence application. The following is a summary of the plan:

  • Extend the remit of Consumer Panel – to become the Consumer Panel for CIPHER.
  • Increase the engagement of service users and carers in research programs/projects.
  • Develop a web-based information resource on research studies that use data linkage – in a form that is accessible to the general public.
  • Hold training and research presentation events that include the public.
  • ‘Link’ with consumer panels in other research centres and data linkage research units.

This plan is being further developed and will be taken forward by the Public Engagement Officer and others. The Panel provided a valuable perspective on priorities for this post. As the post-holder will lead many of our communications with the public and other stakeholders in data linkage research, these include: excellent communication and presentation skills; the ability to communicate concepts in data linkage research effectively to people/patients at all levels and to be empathic; high level skills in planning and delivering events; knowledge of social media platforms and the Welsh language; and experience in setting up/running a project. These points are being incorporated into the developing job description.

The Panel were favourable in their views on the leaflet for the public and recommended that this should be used more widely and given to more people who are participating in research. This work will be taken forward by the Public Engagement Officer and others in further discussions with the Panel and other stakeholders. The Panel had mixed views on the videos. Although each video is less than 7 min, some members felt they were too long and would have preferred shorter pieces of video broken up by staged questions and answers. Several members also would have preferred to see ‘real’ people in the videos, rather than computer-generated images or cartoons.

Panel feedback and survey

Initial feedback after the first Panel meeting was tentatively positive. As a general summary, the respondents enjoyed the meeting and found it informative, they felt it was important to have a Consumer Panel in data linkage work, but were understandably unclear on their role and contribution at this stage, with a recognition of it being early days. Eight of the 10 members of the Panel completed the survey as part of the 1-year review, and the responses were collated and analysed. All the respondents felt that the Panel had covered important topics and the right mix of topics during the first year. Although the eight respondents felt that by being part of the Panel they understood more about the issues around using data in research, six people also felt they needed to know more. All eight people found the Panel interesting as an open forum where they can express their views and make a useful contribution and where their opinions are valued. The majority thought the views of Panel members were incorporated and taken forward, and that the Panel was properly embedded in the management structures. But some were of no opinion and noted in free-text responses that there was a need for greater clarity on how the Panel fits into SAIL management structures and how the Panel's recommendations were being used. The majority felt that some issues connected with data linkage research are complex and hard to understand and that more could be done to include consumers, and their views, in data linkage research. The responses to the structured questions are summarized in Table 1.

Table 1. Responses of the SAIL Consumer Panel to structured questions as part of the 1-year review
 StatementAgreeNo opinionDisagree
 1The panel has covered important topics during the first year.800
 2The panel has covered the right mix of topics during the first year.800
 3Through being part of the panel I understand more about the issues around data linkage research.800
 4I feel I need to know more about the issues around using data in research.620
 5I find being part of the panel interesting.800
 6The discussions provide an open forum for members to give their views freely.800
 7I feel that my opinion is valued.800
 8The views of panel members are incorporated and taken forward.710
 9The panel is properly embedded in the management structures.530
10Being part of the panel allows me to make a useful contribution to the issues around using data in research.800
11Some issues connected with data linkage research are complex and hard to understand.521
12More could be done to include consumers, and their views, in data linkage research.620

There were a range of responses to the free-text questions and the main themes are summarized as follows with some quotations. In response to:

‘If a friend or neighbour asked you what you think of the panel, what would you say?’ The members emphasized the importance of the mix of people on the Panel with a wide variety of experience and opinions, and the importance of having such a Panel in data linkage research. Respondent 1 (R1): ‘An interesting mix of people from different backgrounds and with different experiences who are attempting to contribute towards the well-being of the Welsh population through bringing their own experiences and knowledge to the group.’ R3: ‘Originally I would have considered the reason why a service user panel was needed for SAIL. Now I consider it necessary.’

‘How do you think the panel could be improved?’ There was a suggestion that additional training would be useful and several members highlighted the need to expand the Panel. R5: ‘We must ensure that we have as wide a representative group of members as possible but the size must be controlled so that it does not become too big. I would suggest a maximum of 18 to 20.’ R7: ‘I think we could do with more panel members who are of working age and representatives from the 20–30 age group. Though I am aware of the practicalities of achieving this can be difficult.’

If there any issues around data linkage research that we have missed in our discussions, what are they?’ There were two comments about the need for a greater understanding of how the work of SAIL relates to similar enterprises and more information on how the data are being used. R2: Exactly how the SAIL project links in to other like projects with similar aims.’ R5: ‘Only the necessity for members to fully understand the manner in which the database has increased and what use is being made of this at this moment in time.’

What do you think the panel should cover in the forthcoming year?’ The Panel gave a range of responses covering the need for practical measures to generate greater public awareness of data linkage research, and for more information on the way the data are being used for research and on ensuring confidentiality. R2: ‘See exactly how a researcher is using the data – case study, interview the researcher – see how it actually works.’ R5: ‘The opportunity for members to use their additional contacts within the health groups etc.; so that the knowledge of and contribution to the project can be maximised.’ R6: ‘I would be very interested to find out more about outcomes from SAIL projects and their implications for healthcare.’ R7: Identify practical ways to improve public awareness around the use of data and maybe work on a lay pamphlet showing how different types of health data is collected, stored, and the access protocols and safety mechanisms involved to protect personal data. We could have presentations from different sectors of the health profession explaining how they collect data and we could maybe overtime identify a best practice model for data collection.’ R8: ‘Perhaps look more carefully into anonymity and confidentiality to ensure it's watertight and stays so.’

‘What, if any, additional support would help you as a Consumer Panel member for a data linkage research unit?’ The respondents identified some practical measures, namely more training and a booklet to explain more about our work in order to share this with their contacts. R4: More training.’ R6: ‘A booklet outlining what data linkage/SAIL is, and some details about all the projects that are using SAIL.’

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Aim of this study
  5. Methods
  6. Results
  7. Discussion
  8. Future work
  9. Conclusions
  10. Acknowledgements
  11. References
  12. Links to videos

Main findings

This study has described and reflected on the establishment and operation of a Consumer Panel in the rapidly growing area of data linkage research. Our framework in setting up the Panel was based on an accepted set of principles for public engagement, and the encouraging feedback received from Panel members indicated a measure of success and highlighted areas for improvement. The Panel has participated in a range of activities and the members feel better informed as a result. However, the members acknowledged the need for continued support to understand the issues around data linkage research, and the need for us to do more to include consumers in our work and to incorporate their views in our management structures. Although there are currently only 10 consumer members on the Panel, this scale is comparable to similar groups in other organizations, such as in the Western Australia Data Linkage Unit (McKenzie and Hanley, 2007), and in legal and financial services (FSCP, 2013; LSCP, 2013). We have identified a number of valuable learning points from the findings of this review and the feedback from the survey.

Learning points

  1. We currently have 10 members on the Consumer Panel and although it would be difficult to establish truly balanced representation, we need to expand the membership to include more younger adults, as their views may differ from predominantly older age groups.
  2. We include Consumer Panel members in other management structures and consider this to be important and worthwhile. But we need to ensure that the relationships between the various functions are clearer to the members.
  3. Research is often well peppered with acronyms and abbreviations (enough to make the most ardent cryptic puzzler sneeze!) and data linkage research is no exception. It is easy to forget that not everyone is used to these terms. We need to pay more attention to this in all our dissemination work for, and engagement with, the public.
  4. The views of the Panel members differed from those of the SAIL staff in relation to the videos. The staff members tended to like the computer-generated images and cartoons whereas the Panel members would have preferred to see actual people. We need to bear this in mind when preparing information for the public.
  5. The Panel was generally positive about use of data for research, but thought the public wanted more information and to know more about the research being undertaken. We need to take their advice on board on how best to address this.
  6. We have been encouraged by the Panel's interest and commitment, and common sense approach to use of data, with an awareness of potential sensitivities. We need to make the most of the opportunities they offer in taking the message to other groups and committees of which they are a part.

Future work

  1. Top of page
  2. Abstract
  3. Introduction
  4. Aim of this study
  5. Methods
  6. Results
  7. Discussion
  8. Future work
  9. Conclusions
  10. Acknowledgements
  11. References
  12. Links to videos

We have identified plans for future work based on the feedback from the Panel and wider developments. We will appoint a Public Engagement Officer as part of CIPHER to recognize our commitment to this area of work and to consolidate a public engagement plan. As part of this, the remit of the Panel will be extended to become the Consumer Panel for CIPHER. We will work closely with the UK network and with international data linkage research units, such as the Western Australia Data Linkage Unit, on public engagement to share expertise and to minimize duplication of effort. As well as this, we plan to develop written materials for the Panel members to share with their contacts on other committees and groups. Furthermore, now that we have laid the foundations in working with the Panel and have introduced the main issues, we will create more opportunities for interaction between the Panel and the researchers. We have begun to do this, but we will increase the opportunities for consulting the Panel on research proposals and will invite a series of researchers to the Panel to talk about their data linkage research, to obtain feedback and to share findings. The Panel will also be involved in developing a web-based information resource on research studies that use data linkage to ensure that it is accessible to the general public. This programme of activities will be useful to feed into a follow-up study to be reported on in the future.

Conclusions

  1. Top of page
  2. Abstract
  3. Introduction
  4. Aim of this study
  5. Methods
  6. Results
  7. Discussion
  8. Future work
  9. Conclusions
  10. Acknowledgements
  11. References
  12. Links to videos

Data linkage is a rapidly growing area of research and this study has shown how a Consumer Panel can be involved in the work of a data linkage research unit in various ways and at many levels. This includes: involvement in strategic management structures, reviewing research proposals for appropriateness of data usage, developing our public engagement plan, advising on the job description for a Public Engagement Officer, reviewing information for sharing with the public and, very importantly, contributing to discussions on the issues that surround the use of linked data in research and advising us from the public viewpoint. Many of the issues of involving consumers are similar to those in other research areas, but in data linkage research there is necessarily a greater emphasis on the importance of helping people to understand the safeguards and uses of linked data. During the first year of operation, the Panel has provided us with a range of valuable views and practical suggestions via the meetings and the survey. These findings will be useful in taking our work forward and may be important to other data linkage research units and to consumers considering becoming involved in this area of research.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Aim of this study
  5. Methods
  6. Results
  7. Discussion
  8. Future work
  9. Conclusions
  10. Acknowledgements
  11. References
  12. Links to videos

We would like to thank the members of the SAIL Consumer Panel for all their work during the year and their help in reviewing this manuscript. We would like to thank Involving People for advice and for supporting the Panel members.

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  1. Top of page
  2. Abstract
  3. Introduction
  4. Aim of this study
  5. Methods
  6. Results
  7. Discussion
  8. Future work
  9. Conclusions
  10. Acknowledgements
  11. References
  12. Links to videos
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Links to videos

  1. Top of page
  2. Abstract
  3. Introduction
  4. Aim of this study
  5. Methods
  6. Results
  7. Discussion
  8. Future work
  9. Conclusions
  10. Acknowledgements
  11. References
  12. Links to videos

Video on e-health produced by the E-health Industries Innovation Centre: http://www.ehi2.swan.ac.uk/en/definition-ehealth.htm (accessed on 16 May 2013)

Video on data linkage produced by the South Australia/Northern Territory data linkage unit https://www.santdatalink.org.au/animation (accessed on 16 May 2013)