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Workshop Write-Up: How To Achieve A Strong Citizen Voice In E-Health

On Tuesday, August 20, a group of organizations and individuals from the public, private and third sectors engaged in a conversation around how to achieve a strong citizen voice in e-health.  The session was held in a bright, cheery room at the Hillside Community Enterprise Centre, in a repurposed old school building in Beeston.

With the arrival of the first attendees at 12:30pm, networking began, and attendees got to catch up with old friends and make new ones while enjoying a buffet lunch provided by the Feel Good Café, a café and upcycling project run by SLATE, a group working to support of people with learning disabilities, mental health issues and the long term unemployed.  Participants were assigned to seats around gingham-bedecked, flower-topped round tables, to which they slowly made their way.

The event officially started with an introduction from Becky Malby, who introduced Tim Straughan to set the scene for the day.  Tim is from an organization called Leeds & Partners, sponsored by the Chamber of Commerce and City Council.  The objective of Leeds & Partners is to make the City of Leeds economically more successful and prosperous.  Ostensibly, a more successful city will result in happier and healthier people as well.  The group was then led through a presentation about the Leeds Innovation Health Hub and the creation of a digitally enabled ‘Smart City’ that would accurately reflect our changing times and demographics.  Tim emphasized that this vision of an innovative and more prosperous city would only be effective if it involved as many residents of Leeds as possible in its creation.

Efforts for this project would be focused on three areas: a health hub, a wider digital hub, and a financial and professional services hub, although the topic of today’s discussion was simply the health hub.

There are a number of reasons why the time is right to create a health innovation hub in Leeds.  Leeds is the second most important digital city in the UK, after London, and has the second biggest health authority.  It has the third biggest teaching hospital in Europe, with new CCGs and leadership at three universities eager to make health innovation a priority.  Leeds’ private sector, with innovative health companies such as TPP and EMIS, are also current assets.  Furthermore, the National NHS headquarters, including NHS England, is located in Leeds.

The Innovation Health Hub – part of the reason for today’s event – has three priorities: health informatics, medical technologies and engaging communities.  There are a number of projects taking place in the hub already, such as the rollout in October of the Leeds Care Record, and a project, called Information Governance, on ensuring the privacy of patient health information.  However, there are a number of challenges associated with this digital health innovation plan.  For example, 14.5% of people in Leeds are digitally excluded and have never accessed the Internet, so it is important to look at ways to include them.

A key message that was emphasized is that trying to do things on one’s own is often difficult but, with the partnership and support of others, much more is possible.

After questions, each attendee was directed to find someone they had not spoken to and who they did not know.  For three minutes, each was directed to talk to the other about how an Innovation Health Hub could make a difference to citizens in Leeds.  Listeners were directed to sit quietly and nod, but they could not speak until, after the three minutes, they in turn spoke while the other listened.

As I observed the room during the two three-minute increments, I heard excitement and saw the participants either speaking animatedly or listening intently.  I did not notice any pauses in the discussion at all.

After this session was done, the pairs were asked to bring back their conversation to their table, and had 20 minutes to write down on large post-it notes possible ways this hub could make a difference to citizens of Leeds.  A number of common themes emerged, such as:

  • Increased accessibility, reduced barriers, and a levelled playing field
  • Patient empowerment through bespoke services, peer support, earlier diagnosis, and better information
  • Greater efficiency
  • A total transformation of the health journey experience

There were some issues raised as well.  Some of these included concerns about:

  • Complexity
  • Affordability
  • Patient privacy and security
  • Those who are marginalized or digitally excluded

As well as questions about the definitions of the concepts themselves.

Following this discussion, over tea and cake, the groups then were charged with creating a persona who would be a service user in Leeds.  In this fun exercise, the persona could be anyone: male or female, young or old, of any race and ability, with any interests, and with any family.  After 20 minutes each group then presented: their 28 year old retail worker who loved wine, the 50 year old man who was going deaf and loved to sing and bet on horses, or the Eastern European migrant with twin daughters.  We were asked to create research between digitally excluded and included people.

Each group then mapped and presented a possible route to the strategy and the new sources for each persona through the new hub.  There were many creative and original ideas to lead to better managed care and an increased ability to live independently.  The routes mapped were all different: some employed bus ads, coupons, and others celebrity Twitter endorsements, but all involved people participating and a minimal outlay of funds.

Community participation was a common theme through all mapped routes.  The idea of volunteers acting as community champions to help those who needed assistance accessing the hub came up in all discussions.  It was proposed that a map of volunteer capacity within the city would be a helpful tool to engage people with the hub, with current volunteers teaching digital skills to communities.  It was also suggested that the new Health Hub[1] should be a point of access to a lifestyle and not just health: to sign up for a football club, access recipes, check sports scores, and see upcoming appointments.  The voluntary sector could run digital skills sessions.  This would reduce the possibility of stigma with accessing the services through the hub, whether online or in person, and also increase its visibility among swathes of the population who, while not seeing a need for a health-related organization or app, may, for example, find sports scores to be of interest.  Overall the group thought the best way for citizens to have a voice in the strategy and plan for the city was to join in as full participants and users, not through meetings or consultation events.

As the day closed the buzz around the room was palpable.  Almost all participants stayed afterwards to continue connecting with others or provide other suggestions for the hub.  Special thanks go to Tim for helping start this conversation.

A pdf of this article is available here: Write up of Digital Health in Leeds Workshop-FINAL

EDIT: Kathryn Grace, Service Design and Innovation Consultant, and also family Alzheimer’s carer, attended the citizen event and has put together a brilliant overview of her experience Here.

[1] The Innovation Health Hub is a new space in the city where people with ideas can connect with service users and funders.