The group discussed how to reach out to patients and include them in research.

There was a general agreement that patients worry they are not hearing about research, that people get different access depending on what part of the country you live in.

Databases might be a useful way of holding patient information and contacting them about research, but governance and legal issues around consent must be considered. Many patients expressed a keen interest in being able to join a database that gave them access to research opportunities. It was felt that a database like this should be held in the NHS rather than an individual hospital or a charity. Other people felt that the Patient Support Groups are also a good way to inform people and invite people into research, although not everyone choses to join a Patient Support Group.

• If there was a rare disease consortium database which alerted people of research opportunities that is pertinent to them, would people be interested in joining? People were keen and discussed whether this should be opt in or opt out. Consent can be a barrier.
• How would this be managed given there are many different rare eye diseases? How could patients be sure they were contacted about “valid” research?

Clinics should include discussion about research to reassure people that they are hearing about current advances.

NIHR website aims to have a section advertising research projects.

The group talked about the gaps in research / service delivery

Accessing services, patients living far away from the larger genetic eye services may feel they are missing out. There can be many “hoops” to getting a referral to genetics. There needs to be better awareness and referral pathways. Sometimes GPs don’t know how or where to refer.

The groups discussed follow up appointments and how different clinics work. Some people felt annual appointments are a waste of time, the doctor says no change and “I feel cheated every time I go”. Others found that regular appointments in specialist clinics helped them to feel involved and aware of developments.

There was a discussion around the advantages of national services specialising in groups of conditions, or a network of specialist centres. However what happens for areas not service by one of the specialist centres. Some patients described good practices with hub and spoke model with local services so you don’t have to take the kids out of school but access to specialist centre when needed. There was agreement that services are patchy and this needs improving for equitable access. “It’s a patchy picture for referrals and that links to research”.

There was an acknowledgement that charities are filling the gap for people at the moment.

From a funding perspective, there was a feeling that ophthalmology does not get prioritised as much as other conditions, like heart conditions.

Do people want to take part in research?

The groups acknowledged that some people do and some people don’t but it is important for people to have the choice.

For people who felt they did want to take part in research, this was often about helping other people rather than expecting the research to help them. “Just want to feel useful” “Not for myself, hoping it will benefit others” “I want to give something back to help other patients”.

The groups discussed the advantages of an ECLO role within genetic eye clinics

Providing emotional support “on the day”. Some people may even like the ECLO support prior to clinic and during the consultation. All felt that access to an ECLO at the time of clinic for immediate questions and support was really important. Many emphasised the importance of early intervention.

Taking on some of the work of the genetic counsellor / doctor to support clinics

Making services more joined up. Key link between the hospital and community, social services, charity sector. Importance of integrated care pathways and things “falling through the gap”, helping people know where to go.

Chasing referrals and finding the right people can take a long time. ECLOs can support and understand the pathways to help this journey for patients.

Providing written information as it is difficult to remember everything from a hospital visit.

Suggestion to provide facilities to see parents on their own, without their child, to help parents ask questions that might be difficult when the child is there.

The groups also highlighted some key roles the ECLO could play in the hospital setting

Training and support for doctors working with VI people. Developing training and information packages to help doctors signpost to the ECLO. Helping patients get to ECLO support, have access to the ECLO as soon as possible after a diagnosis. We also talked about training and support for doctors breaking bad news about a diagnosis and making use of an ECLO to support families.

ECLOs may help signpost to other services in the hospital, such as referrals to Low Vision Aide.

ECLOs may help hospitals to improve accessibility for VI people. An example given was the small print on hospital food menus. Developing knowledge and awareness across hospital staff is a key opportunity for a hospital employed ECLO. Accessible emails and texts for appointments was also discussed.

We talked about the sorts of skills and experience an ECLO could or should bring

There was debate about whether an ECLO should have lived experience of VI. Some felt this was helpful although all agreed that the most important thing was the ability to empathise and understand VI.

The aim of this session was to discuss issues with, and consider research into solutions for, taking written informed consent from patients with visual impairment (VI). Written information and informed is a regulatory requirement for participation in medical research and many medical procedures and investigations. There is an obvious issue in a group of patients with varying and sometimes severe VI that information may not be legible and signatures given by patients when the consent form cannot actually be read. This has been a known issue in genetics/ophthalmology services for some time.

Current guidelines recommend using an independent third party to participate in the information provision and informed consent process, adding time and administrative burden to a sometimes already lengthy process. Sometimes it is not possible to find a suitable third party that is available at the correct time.

Stuart Ingram proposed conducting research on alternative methods. The goals would be to:

• Enable VI patients to review information independently
• Enable VI patients to provide their own consent
• Enable secure electronic storage and dissemination of information and completed consent
• Reduce time & administrative burden of consent process in NHS setting

The focus group started the importance of:

• Providing information in a format chosen by the patient
• Making a range of formats available – regular, large type, accessible (black/yellow, high contrast), spoken word, braille or electronic
• Ensuring compatibility of electronic formats with patient’s document readers and other technology:
  • putting text in body of an email rather than an attachment
  • preference for .doc over.pdf format
• Providing information in a format chosen by the patient

Some specific questions were asked of the group (shown with responses):

1. What issues if any have you previously found when consenting to and receiving information on research or specific procedures?
   • Difficulty in reading information
   • Lack of choice of formats
   • The above leading to not being able to review information further/again on own timescales
2. Would you be willing to participate in research to improve consent in VI patients?
   • Yes – all participants in the focus group were willing to do this
   • However queries over design of such research – would it run on top of existing research projects that recruit VI patients or as standalone
   • Group were willing to be involved in the design & management of research

3. Should we be using technology to overcome or reduce this barrier?

   Yes. Suggestions from the group included:

   • iPad/smartphone app
   • Web interface
   • (see also above feedback on range/compatibility of formats)

   The technology should be able to provide:

   • Choice of format
   • Choice of language
   • Choice of reading age or similar (patients with learning difficulties)
   • Retains copies of information following consent
   • Ability to re-consent upon protocol amendments
   • Electronic distribution of completed consent

   The technology could provide:

   • A test of participants knowledge prior to consent.
   • Notifications (in-app) of changes to, or updates about research

   Other suggestions were that:

   • A patient group should be set up to feed into development of the idea/research/app etc.
   • There are some existing platforms for taking research consent. Are these suitable or could they be adapted to the needs of VI patients?
   • NHS REC (Research Ethics Committee) should be approached to feed into this as above. REC will need to be satisfied of regulatory suitability of electronic consent.

Stuart Ingram stated that the idea had been discussed with MFT Innovation Factor (IF), and a proposal would be progressed during the course of this year.