The Cumbria Rural Health Forum: initiating change and moving forward with technology

Cumbria Rural Health Forum

Any it e m a n d it s a s s o ci a t e d m e t a d a t a h el d in t h e U niv e r si ty of C u m b ri a 's in s ti t u tio n al • t h e c o n t e n t is n o t c h a n g e d in a ny w a y • all file s r e q ui r e d for u s a g e of t h e it e m a r e k e p t t o g e t h e r wi t h t h e m ai n it e m file.

You m a y n o t
• s ell a n y p a r t of a n it e m • r ef e r t o a ny p a r t of a n it e m wi t h o u t ci t a tio n • a m e n d a ny it e m o r c o n t ex t u ali s e it in a w a y t h a t will i m p u g n t h e c r e a t o r 's r e p u t a tio n • r e m ov e o r al t e r t h e c o py ri g h t s t a t e m e n t o n a n it e m .Th e full p olicy c a n b e fou n d h e r e .Alt e r n a tiv ely c o n t a c t t h e U niv e r si ty of C u m b ri a R e p o si t o ry E di t o r by e m aili n g in si g h t @ c u m b ri a. a c. u k .

Introduction Background
Cumbria is the second largest county in England by area.Its population, at 495 000, makes it one of the most sparsely populated.Half of Cumbria's total population live in areas that would formally be defined as rural 1 , and the urban centres are relatively small and geographically dispersed 2 .This rurality is not unique to Cumbria and is known to cause specific problems in the delivery of health and social care [3][4][5] .
Accessibility to key local services in Cumbria (including GP appointments and hospitals) currently exceeds national average times in the UK 2 .Delays in hospital admissions due to administrative procedures have previously been documented 3 .The high rate of suicide amongst farmers in remote areas in Cumbria initiated efforts to encourage people to seek help for their mental and physical health and minimise the relative inaccessibility of primary care, particularly in remote areas 4 .For example, an outreach model was designed to deliver general health care to farmers by using nurse practitioners 5 .Another problem has been the risk of hospital closures due to a recruitment crisis faced by local authorities in Cumbria 6,7 .
The Cumbria Rural Health Forum was formed in September 2013 to address the following questions related to the delivery of health and social care in Cumbria:

Aims and priorities
The forum aims to improve health and social care delivery for rural communities, and share practical ideas and evidencebased best practice that can be implemented in Cumbria.
The priorities of the forum during 2014-2016 are: • to explore the value of digital technologies in health and social care, including telehealth, telemedicine, telecare and assistive technologies, and e-health • to influence and provide evidence to implement changes in health and social care • advocacy and representation.

Membership
The forum comprises a varied membership involving health and social care providers from the public, private and third sectors, digital technology companies, health and care social commissioners and policy makers in Cumbria.Membership started at 30 in 2013 and has increased to 158 members from 56 organisations from private, public and third sector agencies.Membership is open to any organisation or representative body that is interested in contributing to the forum's mission -either based in Cumbria, providing health and/or social care services to Cumbria, or planning to do so.

Methods
The Delphi method The forum adapted the Delphi method 8,9 for conducting its work through meetings and workshops between stakeholders to reach agreement toward agreed actions, tasks and issues in discussion (Fig1).The Delphi method was originally developed as an interactive consensus-orientated technique relying on a group of experts answering collected data from respondents in rounds 10,11 .It has been used in various fields of study such as project management 12 , geriatrics 13 , operational research 14 , social policy 15,16 and information systems 17,18 .
While the Delphi method is normally survey-based, the method was adapted in the present study to be used in group settings 11 , combined with the open innovation approach 19,20 .
Open innovation is 'the use of purposive inflows and outflows of knowledge to accelerate internal innovation, and to expand the markets for external use of innovation' 21 .It encourages the use of internal and external ideas, reflected in the sharing of best practice relevant to Cumbria, and making connections with both internal and external resources 22 .The following modifications were made to the Delphi technique used by the forum: • group discussions through forum meetings, including feedback on email and discussions on social media • discussion and generation of structured statements at roadmapping workshops • incorporating elements of open innovation where the sharing of best practice with forum members was held to set the context for them to fully understand the purpose and aims of the forum.Forum members were also invited to answer questions and to work together on specific exercises relevant to the issues in discussion.
In the whole-group modified Delphi method used by the forum, members worked in groups, either answering questions or carrying out implementation exercises, and reported back to the full meeting, using flip charts and verbal feedback.A brief session of questions then followed for clarification.In addition to the group work, there was sharing of best practice through presentations on digital health and social care issues, services or projects, either locally or outside Cumbria.Information about what went on during forum meetings and workshops was emailed to all members.This updated people who were unable to attend meetings and enabled them to send any comments, thoughts or feedback by email.The forum used Twitter to conduct four chats on digital health technologies.All information was collected and sorted into lists to be fed back to the Delphi rounds.

Issues relevant to Cumbria
The first stage of the process was to confirm a common understanding of the rurality issues that were considered to affect delivery of health and social care services to the Cumbrian population: • dispersed communities, meaning that people have limited access to services and have to travel further to access basic health care • smaller GP practices and other health centres, meaning that staff may feel professionally isolated and removed from opportunities for professional development • a greater reliance on volunteer services • a population that comprises relatively more older people than in urban centres • poor quality broadband and mobile infrastructure in Cumbria.
The first forum workshop also confirmed that the use of digital technologies in improving health and social care in Cumbria was a key priority for the forum (see Appendix I for the outline of forum events).It was agreed at the outset that the strategy work should not be limited to any particular technology.Digital health terminologies have been used differently in the literature by different authors [23][24][25] .To clarify the subtle differences in these terminologies and avoid confusion, the forum adopted agreed definitions of terms (Fig2).It was agreed to exclude technologies in development (eg new types of wearable sensors) and the use of digital technology for purely administrative purposes (such as online appointment booking).
The program of work was planned around the following objectives: 1. Map existing digital health and social care practice within Cumbria and transferable best practice from elsewhere.2. Gain understanding of issues specific to rural health and social care.

Identify needs and opportunities for use of digital technologies (eg for remote consultations). 4. Develop a roadmap for implementation within
Cumbria, including roles of key organisations, implementation plans.

Results
The findings are available on the forum website 26 .
Working on the Cumbria Strategy for Digital Technologies in Health and Social Care The program was undertaken over a 15-month period, shown on the timeline in Figure 3.The forum's work is presented in Appendix I.An investigative program underpinned the digital roadmapping workshops to gather necessary data to inform the forum and provide a basis for discussion 27,28 .
• To map existing digital health practice in Cumbria, forum members shared information on projects or services currently available in the county, including those that had expired.A total of 27 digital health and social care activities were reported.A full report is available online 29 .Informal interviews with members of staff working on the digital health projects or services allowed the research team to understand work conditions, staff experience and how the services were provided.
• Two qualitative studies involving practice managers (n=5), general practitioners (n=15) and people with long term health conditions (n=25) were examined.Further information on the studies is available online 26 .The studies indicated that: o telephone triage was increasingly being adopted by general practices as a means for patients to access healthcare.When asked about using digital technologies for consultations, practice managers recognised the potential benefits of remote consultations o general practitioners believed that digital technologies could help reduce demand for their involvement in minor illnesses through improving transactional efficiency in the provision of services.Digital technologies in social media could be used to educate and empower patients o people with long term health conditions expressed willingness to use remote consultations if it was made available to them, and welcomed the prospect of email or secure messaging with their care providers.
Researchers found a lack of knowledge of possibilities, such as access to electronic health records.
All findings were synthesised and fed back into the forum through the roadmapping workshops for members' views.Consensus was reached by the forum on the following: • The international literature review reflected similarity of experience relevant to Cumbria.
• The mapping work found that efforts to adopt digital technologies have already begun in Cumbria, but there were highlighted areas for improvement.
• Both professionals and patients recognised the potential benefits of integrating digital technology into health and social care in Cumbria.
• It was recognised that staff need training and skills development specific to digital care services and technology for successful implementation.
• All digital technologies reviewed were thought to offer some benefit to rural communities, particularly where they can be used to avoid travel by either a patient or care professional.

Finalising the strategy
Three major themes were finalised for the roadmap on implementing the Cumbria strategy for digital technologies in health and social care (Fig4): Improve health outcomes through use of digital technology: Successful planning needs to focus around particular problems or care pathways.The implementation plan will proceed through thematic workshops linking small groups of professionals working on a single pathway, patient group or service.
Explain, clarify, share good (and bad) practice, assess impact and value: The evidence base now assembled supports a growing role in influencing and advocacy.The dissemination, communication, information sharing and collation, networking and discussion activities will continue.
Develop a digital-health-ready workforce: The forum will work on defining a set of minimal required skills for digital health and social care, to enable design and delivery of services in clinical settings 54 .The use of e-learning and videoconferencing for training and development will be considered 55,56 .

Lessons learned and implications
Findings from the forum have significant implications for practice, where multi-organisational consensus building is planned.The forum experienced issues consistent with those of other Delphi studies 57 .The number and representativeness of people at Delphi rounds affect the potential for ideas and how evaluation and consensus is reached 58 .There were some irregularities in meeting or workshop attendance.Despite holding a membership of more than 100 individuals, attendance at meetings was in the range of 20-30 people.
The exact representation of stakeholder organisations also varied.To ensure full participation and involvement of all stakeholders, open-ended feedback by email was accepted from stakeholders who could not attend forum events.Stakeholders were encouraged to provide additional comments or express disagreement.The next issue was not being able to engage key people during discussions -particularly GPs, who were frequently unable to attend due to clinical commitments.To ensure that their views could be received, Twitter was used to hold live discussions on digital health topics.To date, four Twitter chats have been held (available at https://storify.com/CumbriaRHF/crhfchat).The forum's Twitter chats generated keen interest in future collaborative efforts, particularly at primary care level (Appendix IV).
The forum experienced issues common to group problem solving 59 , such as 'group rut' where a group seems to have the same discussion repeatedly, regardless of the current agenda.
To remedy this group rut, forum participants were reminded of the goals of the group work or exercise in question.Structured exercises were used during workshops 60 .Poor follow-through 61 was also experienced amongst a few stakeholders, where they had not fully understood the purpose of a particular meeting or workshop.To gain understanding and foster familiarity in working together as a forum, participants were reminded of previous discussions and updated on investigative work.This helped to encourage interest, ownership and active participation amongst stakeholders 62 .
The forum facilitated collective effort to address rural health issues, but it does not have any mandate to deliver change directly.It is emerging as an important think tank and influencing body.
Forum events provided opportunities for the sharing of best practice, discussion of health and social care issues and networking (Fig5).More significantly, the forum has influenced emerging policy within the Cumbria health economy and discussions are in progress to formulate an ongoing advisory role to senior policy and decision makers.

Conclusions
The forum has been successful in galvanising the interest and support of more than 50 organisations and more than 150 professional individuals in Cumbria, concerned with exploring important questions of mutual interest.The involvement of the voluntary or third sector and the private sector and dialogue with public sector bodies has been a particular achievement.The modified Delphi process adopted has presented some difficulties and limitations, but has ultimately led to a shared implementation plan, which has been successful in securing additional funding support.Awareness has been increased of digital health and social care solutions and a body of evidence has been compiled.The forum is recognised as an important think tank and influencing body, with a wider dissemination and advocacy role.Appendix II: Digital health in general practice -general practitioner perceptions General practitioners' attitudes and experiences of digital health care In order to better understand how digital technologies can enhance primary care from a general practitioner's perspective, 15 GPs were surveyed by face-to-face interview, email and phone.They were asked to reflect on their experiences of using technology, to consider which services technology would be most helpful in supporting and to highlight any issues and concerns.
Most GP consultations are face-to-face (surgery appointments, home visits), with a substantial proportion of GPs now using phone calls to supplement this.Some practices are starting to use social media for health education and general health questions.GPs were asked how they think technology could improve their practice.
Suggested uses of digital technology to improve practice o It has the potential to improve transactional efficiency in primary care through reaching the patient via technology -possibly through secure messaging or email, to let the patient know of test results.

Remote consultations via video-links
o No GPs currently undertook remote video consultations and there were mixed reactions to the idea of doing so.o Some GPs thought remote consultations should be trialled and offered as an option for patients -it could be a useful compromise between face-toface (the best option) and a phone call (necessary for the convenience of the patient).
o The main value may be in providing better access to secondary care.o GPs did not believe remote consultation would reduce workload but acknowledged that it might speed up referral times and offer cost-effective alternatives to patients having to travel distances to see their doctors.

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Remote secure access to patient data o Digital access to the patient database via mobile devices or laptops would save GPs time and mean they had the right clinical information when with the patient.
• Improve the primary-secondary care interface o Use video and better data sharing between GPs and consultants.
• Telehealth o Some GPs had experience of telemonitoring or telehealth systems (such as Florence Simple Telehealth System), which were felt to offer potential value.

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The level of acceptance was mixed, with some seeing it as an essential enabler, others expressing more caution.
• One interviewee was of the view that primary care was already sufficient without technology.
• Health equity was raised as a concern, as it may be mainly higher socioeconomic groups that have access to smartphones, email and home broadband.

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The limitations of broadband and mobile phone coverage in Cumbria are a restriction.
• Funding to invest in equipment and infrastructure has been a constraint.

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Patient emails need to be integrated into the core clinical software system for GPs so that the email becomes part of the sessional work -although it may seem like email to the patient.
• However, respondents were concerned about: o data governance risks and security issues o being inundated with emails from patients o email being viewed as outside of the core clinical work package for doctors o the difficulty of clinically interpreting emails from patients without interacting with them o the possibility that email consultations would increase the likelihood of legal liability in the event of any incorrect diagnosis or 'missed' symptoms presented by the patient.

Audit of GP workload
Four GPs reviewed a day's work.Results showed that 39% of patient cases could have been dealt with digitally.Examples are: • cases where symptoms or health conditions can adequately be described over the telephone or by email • follow-up appointments where patients have already been diagnosed and treated -for example checking health symptoms • discussions regarding health conditions and test results

• requests for information
• reviewing prescriptions and health conditions • consultations not requiring hands on (ie physical examination, medical procedures, bio measurements) Appendix III: Using technology to manage long term conditions -patient perceptions, attitudes and experiences Patients with long term conditions -attitudes and experiences of digital healthcare Twenty-two people with long term conditions of fibromyalgia, myalgic encephalomyelitis and acquired brain injury were interviewed and asked to reflect on their experiences of receiving healthcare services and how they could see technology being used.
Participants were recruited through patient support groups and were in the age range 25-66 years (mean age 47) -3 men, 19 women.Many of the patients reported one or more secondary long term conditions in addition to the primary one: hypermobility syndrome (4), chronic pain (12), arthritis (4), diabetes

Attitudes to technology
• Most were active on social media and used the internet for utility purposes, accessing information, networking and entertainment.
• Half of the participants reported using health apps and health monitoring devices, particularly medication reminders and pain diary apps.
• However, a few participants were unfamiliar with using any form of computer or mobile device.

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Of those that did use technology, some reported that they found it helpful for informally managing their condition, through friends and online patient communities.
• 'Helps me feel I'm not alone … helps with benefit claims, enables me to help others in similar situations …' • 'Internet gives me the chance to participate in so many things, and contact people, which due to my condition I wouldn't be able to do without it.'

Shared patient records
• Many patients reported difficulties in getting their condition satisfactorily diagnosed and frustrations at different professionals not having their full history to hand.
• Some patients also noted that they would like to have access to their records so they could ensure key information is noted.
• 'If I could access my own records pre my GP appointment, I could read my consultant's letter and attend my GP appointment more prepared.' • 'I think it's about time, saves you trying to explain your condition/s over and over to each service provider.' • 'I would love to be able to access my medical notes and care in one package, where there are contact links for everyone dealing with my specific case/needs and be able to access from PC and mobile devices.' • 'This should already be in place.So many of our health records are not up to date, or the doctors don't read them.' Awareness of technology for self-management • Patients were generally not aware of telehealth solutions for remote monitoring and had not been offered this as an option.
• Some patients indicated that they would like to monitor pain and other symptoms, but were unaware of apps or other products that could help with this.Digital communications with medical professionals

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Participants were asked to comment on preferences for face-to-face consultations and other means (telephone, email, video/Skype).Views were mixed.
• Several participants preferred face-to-face and felt that other forms of communication were a compromise.
• It was noted that face-to-face appointments are essential if a physical examination is required.
• Many participants, however, would welcome the convenience and saving a journey that could be uncomfortable, painful and tiring.
• Use of digital communications would also save considerable costs and time to patients, many of whom needed to use taxis or ask someone else to accompany them.

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There was some scepticism about remote appointments or the potential effectiveness of videoconferencing because participants felt that there would not be any flexibility on the side of their healthcare provider in accommodating appointments for them.
Some quotes from study participants I have never used Skype, but if it meant getting appointments or consultations quicker then I would give it a try.Often when I have struggled to an appointment I am in a lot of pain and suffering cognitive problems which mean I cannot concentrate or express myself properly.If I could email, I could put things in writing in my own pace.I would be very pleased if I could email someone to clarify my understanding of what's happened in consultant appointments.Or just to get general answers about particular conditions.I am unable to know until the day whether or not I can attend as on average I am only well enough to leave the house a couple of days a week.

Conclusions
Participant responses indicated a need for digital technologies amongst people with long term conditions in terms of: o management of health condition o maintenance of continuity of care o enabling access to health care.
Addressing the issues faced by people with long term conditions by integrating digital technologies into a variety of clinical and social settings may improve their quality of life.
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Figure 1 :
Figure 1: Adapted Delphi technique used by the Cumbria Rural Health Forum.

Figure 2 :
Figure 2: Agreed scope and terminology used by Cumbria Rural Health Forum.
Note: The NHS England Code4Health community adopts an open-to-all approach in creating a collaborative workspace for people involved in finding digital solutions to improve healthcare in the National Health Service (NHS).CPD, continuing professional development.

Figure 4 :
Figure 4: Roadmap for Cumbria Strategy for Digital Technologies in Health and Social Care.

Figure 5 :
Figure 5: Overview of Cumbria Rural Health Forum roles, activities and interactions.
Tailored information sheets and advice o Some practices making use of Twitter and Facebook for general advice.It can help reduce demand for GP involvement in minor illnesses, through using social media for health education and more efficient provision of advice.Email was generally perceived as being valuable (in principle) to support health management in patients.o Two GPs used email to communicate with a small number of known and trusted patients.