Keeping your online health and social care records safe and secure
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  • The journey began 2 years ago with a conversation between Marlene Winfield, then Director of Patients and Public Relations of at the DHID and Justin when there were working on BCS response to the IS consultation. This set in motion the 1st jointly funded project between the DH and the BCS. Several months later, Justin and Ewan Davies found me at the top of the BT Tower at the EHI CCIO Campaign launch event where my involvement in this project began.After a few delays and hiccups in obtaining funding for this project, the BCS and DH jointly committed equal share of resources to fund this project. DH funding was obtained by a grant by exception approved by the Treasury.After you can see in this timeline activity picked up substantially after January 2012 leading to the production of this guidance and today’s event.
  • In choosing the right partner to deliver this piece of work, we felt that it was really important that we offered it to a team that recognises and understands the more human and social aspects of record access as opposed to the technical aspects. A team with a track record of creating information for public consumption. And a team with domain expertise in the field of record access, a relatively young field. So after an open and transparent tendering process carried out to standards expected of the DH, we offered
  • After quite a close contest, we offered the contract to MynorsSuppiah, a relatively new SME that we felt was best placed to deliver this. GeraldineMynors, Sarah Smith and Emily Newsom-Davis.Retrospectively, we are confident that we have made the correct decision.In addition to being a pleasure to work with, Geraldine and her team have actually over-delivered, under budget and ahead of time! I do wonder when I will ever repeat those words again in my career.
  • The success of any project is ultimately made up of the people that is involved in it. We were very keen that most stakeholders are represented in the steering committee.Working together with MynorsSuppiah, this group provided a very important early steer about the scope and content of the guidance. However, it was recognised that a smaller, more agile decision making unit is required to respond to queries and to make decisions as the Geraldine and her team carried out their work.A project board of 6 that I chaired for was formed for this purpose and it worked very well in practice. 3-4 teleconferences were scheduled and interim communications were all conducted by email.
  • In addition to the steering committee, Stakeholder Consultation - including patient organisations, informatics experts and commercial providers of patient record systems.Twenty-five organisations took part in the survey, out of a total of 51 potential respondents.There was a disappointing lack of response from suppliers – with only one responding openly.Focus groups were held for those aged 50 and under; the other for those over 50 years. Each group included: a fair mix of men and women of all ages and of levels of education; two members were black or of a minority ethnicFinal Project Summary Report – Chronic conditions, ethnic minorities, use internet regularly.
  • Indeed user testing revealed some interesting myths and concerns that may not be immediately obvious to those of us that work in this area. The guidance does address of these issues.
  • A polished draft that was appropriately layed out was tested. Instead of a simple asking people what they thought, Geraldine and her team set specific information challenges with users and measured their responses. This is approach is widely used by the MHRA and EMA. In parallel, the original groups of stakeholders, the steering committee was also given an opportunity to comment on this draft.Overall, the response was very positive and no major changes to the content of the guidance was required even though many changes to wording and presentation style was changed in response feedback.As the first draft performed so well in user testing, it was felt that another round of user testing was not required even though this was in the original project plan.
  • Towards the end of 2012, following crystal making the Board approved the guidance.
  • And this is what has been approved and available today.A 16 page A5 booklet, an A5 and A4 summary sheet.And of course, there is an online presence at the link shown that is hosted by NHS Choices.
  • Now and throughout the whole project, we were acutely aware that this project did not exist in a vacuum and efforts were made to engage with various bodies to keep the up-to-date with our progress and early insights that might help steer how further guidance might be produced and factors to consider on how to role out electronic record access nationally. Furthermore we recognise that as technology changes, this guidance will need updating to ensure that the information remains accurate. All attempts have been made to this guidance to emphasise principles rather that specifics of the system used by each record provider.Not forgetting of course the ongoing Caldicott Review in Information Governance.
  • The title of this talk and indeed the Guidance is about ‘Keeping your online health and social care records safe and secure.’However, I think that it is important to recognise that the bigger picture is *not* about keeping records safe and secure. What it is, is about a safer patient.This is someone who is more engaged with the management of their health and care of which we believe that having access to their records play a critical role.We are hopeful that this guidance will help increase the confidence of those thinking about and wanting to access their records whilst reducing any potential harm that electronic access to digital records creates.I look around this room and I see representation from software system providers, healthcare professionals, patient groups, NHS-CB, DH and members of the press. You are all key to helping us maximize the impact of this guidance that we have all worked very hard to produce.
  • Thank you…

Keeping your online health and social care records safe and secure Presentation Transcript

  • 1. Wai Keong Wong MRCP PhDChair, Project Board
  • 2. The Journey2011 2012 2013 1st Steering Comm Power of LAUNCH! Information Print Selection Ready Deadline Project Layout Manager Invitation to tender Approved Idea BCS-DH Contract Copy Funding approved by Crystal Marked HM Treasury
  • 3. Information for Public ConsumptionBehaviouraland Social Aspects Realistic and Pragmatic Domain Expertise - Electronic Records
  • 4. Steering Committee | Project Board Independents Patient Representative
  • 5. Methodology | ScopingSteering Stakeholders Focus GroupsCommittee • Face to Face • 25 • Age <50 • Online Respondents • Age >50 • Low response rate from suppliers
  • 6. Myths and Concerns uncovered• ‘Everyone will have to sign up to get full access to NHS services in future’• ‘Signing up for online access means the creation of an electronic health record’• ‘Signing up for online access makes your electronic health record inherently less secure’• Concerns about potential coercion
  • 7. Scope• Electronic Records• England• Competent Adults – Thinking about, Already Accessing• Primary, Secondary and Social Care NOT Benefits of Record Access Secondary Uses of Data Children and Vulnerable Adults
  • 8. Methodology | User TestingOne to One Stakeholders Project BoardInterviews • Polished • Steering • The Final Draft Committee Word • Information Challenges • MHRA/ EMA
  • 9. The Journey2011 2012 2013 1st Steering Comm Power of LAUNCH! Information Print Selection Ready Deadline Project Layout Manager Invitation to tender Approved Idea BCS-DH Contract Copy Funding approved by Crystal Marked HM Treasury
  • 10. http://www.nhs.uk/records
  • 11. What lies ahead??• More versions – accessibility• Form part of larger set of guidance• Submitted for 2013 BMA Patient Information Awards
  • 12. A Rapidly Changing Landscape• Technology• RCGP Working Group• Health and Social Care Bill• Caldicott Review
  • 13. protected from or not exposed to danger or risk; not likely to be harmed or lost: safe records and safe patient
  • 14. Wai Keong Wong* BCS Health (Chair of the Steering Group and Project Board)Isabel Chevis CEO, IHRIMNeil Churchill CEO, Asthma UKEwan Davis* Health IT Consultant, BCS; Woodcote ConsultingAlan Doyle Director, National Information Governance BoardToto Gronlund* Director Patient and Public Relations, DHIDSue Hawkswell Managing Director, CSE Healthcare; IntellectMike Haynes BCS; Independent ConsultantPenny Hill NIGB; Mortimore Hill Associates (Social Care)Peter Short National Clinical Lead, GPs, DHID, RCGPKeith Simpson Nephrologist; Renal Patient ViewPauline Smith* ProgrammeManager, DHIDBen Toth Information Manager, National Institute for Social Care and Health ResearchJean Waters Patient RepresentativeJustin Whatling* Senior Director Strategic Consulting in Europe, Cerner; Chair, BCS HealthMarlene Winfield* Independent Consultant * Project Board Members