Summary Report

Facilitated by

A free interactive and inspiring day exploring how online personal records enable person-centred health and social care

Appointment bookings: ................ Doctors notes: .............................. Medical history:

Wellcome Collection
Franks and Steel Room Wellcome Collection 183 Euston Road NW1 2BE

Saturday 19th January 2013 11am - 3pm

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Imagine a future where patients have access to all of their own health information online, so they can make informed decisions about their own care, and where patient records dont just include the professionals notes, but the patients too.
London Connect, a partnership between the Mayor of London, NHS London and London Councils, hosted an all day drop-in event on the 19 January 2013 at the Wellcome Collection to explore this vision for the future and to increase peoples awareness of access to their health and care records. Raising awareness of the agenda is a crucial component to the wider ambition of encouraging patients to take action to become more actively engaged in their health through greater access to good quality personalised health and social care information. accessing their own records is the norm and how it could facilitate greater management over their health and well-being.

Promoting patient pull A wide audience was encouraged to attend the event, including those who may not traditionally be involved in their local health community in order to spark pull for access to records. The event was actively promoted through a variety of channels, including via a Twitter campaign, myhealthlondon, e-Health Insider, NHS Trust Patient Advice and Liaison Services (PALS) and patient and public involvement groups, GP Patient and Participation Groups (PPGs) and through non-traditional health event promotion routes such as TimeOut London and the Londonist. The Connect Event was facilitated by the Innovation Unit and was delivered by members of London Connects Community of Practice including patients, health and social care professionals and technology entrepreneurs. Over the course of the four hour event, 70 people took part.

The Connect Event aimed to generate excitement and energy about the possibilities that having access to health information online can provide for the public now and in the future. It offered opportunities for participants to explore not just what online records access would be like or look like, but what it would feel like for them. The event sought to help participants to recognise how their lives could be different in a culture where

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Innovative methods In addition to communicating to the public in new ways, the event included a variety of different innovative methods to engage participants in these complex concepts of how they can take greater control over their health and well-being. A key goal was to inspire participants about the possibilities, informing them about what is currently available in London and helping to identify and discuss any concerns. The variety of methods enabled participants to engage with the topic in ways that were relevant. Participatory theatre Participatory theatre was used during the Connect Event to facilitate a dialogue between the audience and actors about how it could feel to access and interact with online health records. The play took part in three acts, each act based on a specific health or social care scenario in which online access to records could be used. The scenarios were based on the myhealthlocker personal health record aimed at supporting mental health service users, facilitated by the South London and Maudsley NHS Foundation Trust. This participatory theatre took the audience through scenarios, starting in a GPs surgery with an initial prognosis of a mental health condition, moving to a patients home, and ending in a hospital for an appointment with a psychiatrist. The audience was encouraged to engage in dialogue with the characters and ask questions about the scenarios. Some of the key insights came from GPs in the audience who were able to critique the doctorpatient interactions and expressed anxiety about the proposed shift in the role of the GP, from diagnostician and solution-provider to a motivator and enabler of electronic self-management. Traditional GP consultations were too short and introducing this new way of working seemed threatening to good practice. What the audience found useful was the ability to experience in a simple and practical way what an online personal health record does and how it is used. For many it seemed to liberate them to ask questions and really interrogate the website and the assumptions behind it. This was also useful for David Newton, who role played the clinician in some of the scenarios and who also project manages myhealthlocker, to gain feedback and help to develop the system further. My technology corner A custom-built dashboard, which provided participants with a view of 20 different applications (including health trackers, appointment and drug management diaries, and allergy managers), allowed participants to explore the different facilities that could be available to support them with greater self-management of their health and well-being. Participants were encouraged to create their own dashboards, identifying the applications which they felt would benefit them the most.

Design table The design table provided participants with an opportunity to view different examples of online records and e-health innovations from around the world, and to explore user-friendly design concepts of what online records could look like. Participants were encouraged to draw their own ideal of an online health record. Video corner and ideas cards Participants were actively encouraged to share their thoughts, hopes and concerns about this agenda in different ways, including through

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participation in a video interview and noting thoughts on ideas cards that were scattered throughout the room. Real-life examples Real-life demonstrations of online health records currently being used were available throughout the day for participants to further understand how they are currently being used in health organisations across London. Thanks to the energy and enthusiasm of the public, the day was a great success. Not only did it engage a new group of people in the online records agenda, but it generated a large amount of intelligence about how people would like to engage with their health and social care information.

Most popular applications

The 5 most popular applications collected through the dashboard were the following: Drug Management
An application that allows people to track their prescriptions and order renewals. Including a calendar through which people could track the drugs they have taken or need to take.

1 2 3 4 5

Appointment manager
An application that allows people to manage their appointments. Including a diary/calendar into which people can add appointments and which will provide reminders/updates.

Health tracker
An application that allows people to track information about their physical health, such as blood pressure, BMI, Lipids, Kidneys and vital signs. Symptoms can be visualised over time in the form of a graph.

KEY FINDINGS
General interest

Wellbeing tracker
An application that allows people to monitor moods, depression, addiction, and other wellbeing indicators.

Food tracker Participants were excited about using online health records and showed a great interest.
An application that allows people to keep track of their food habits and how many calories they have consumed.

Would you use an online health record if it was available?

Absolutely. I ask my surgery very regularly when I am going to have one.

Being able to book appointments and transact business with my surgery online

Easy access to information

The real advantages are being a better informed patient, not having to chase up things when I want to find something out. Just having it there whenever I need to look at it.

Professionals need reassurance

They are worried that I am not going to understand things and I am going to be there all the time asking them questions.

They (doctors) are worried that its going to increase their workload and we have to find ways of reassuring them that this in the long run will probably reduce their work load. Or theyll have the same workload but theyll have better outcomes.

Personal information security

There was a concern about how safe it is to have personal information online and who can access this information.

Theres a lot of personal information there and I think like anything theres a security element to it, issues about how safe that information is, how useful it is, who is looking at it.

Patient engagement
Theres some evidence from some GPs who have given people access to their records in South London showing that over time, people had better outcomes, used better medication and they decreased the time they spent in surgeries. Bigger studies in the States show that people have more contact with the surgery once they are given access to a record.

I work with the patients program but the reason I got involved is because of mistreatment by the NHS of my own medical history. I was given a wrong diagnosis because notes got lost. So I am a real avocate of patient empowerment and patient involvement.

But what they havent done yet is looked at whether having more engagement with the surgery is a bad thing, or whether you get better engaged patients who manage their health better

When you go and see a doctor you only get a very small slot. Online records could help you go to the appointment already prepared with questions, knowing what to say.

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Booking a doctors appointment tomorrow: fast and friendly

Booking appointments
There was a great deal of interest in how transactional services, like booking appointments online, could help patients get access to appointments when they want.

Booking a doctors appointment today:

Especially people with multiple long term conditions, if you are keeping a diary online you could even save yourself a GPs appointment by phoning the receptionist and saying: I am feeling a bit x-y-z, could you get the doctor to look at my diary and then see if I need to come in or not. It can potentially save everyone an appointment.

quick and easy frustrating and time wasting

It actually came up in the play. Somebody said on a Sunday, well if you can make an appointment for Monday morning Ill come with you. The fact of the matter is that if you have a complicated history and want to see a GP that knows your medical history and knows you, then you dont get an appointment for 3 weeks.

The future... in 20 years time

I think in 20 years time my childrens generation, who get all their information and do all their transactions online, will look back and think of a very primitive time when people still used paper and didnt have the same information as their clinicians and how strange that must have been.

Theres so many possibilities when it comes to online patient health

There are people out there trying to put my dreams into practice