NWC CHC had an active public involvement and engagement senate. the role of the senate was to ensure that the patient voice is represented in the region’s health improvement projects.
Stimulating debate with the wider public regarding consent and use of data, the NWC CHC team supported the completion of three main projects including a patient and public survey, co-development of voting polls and an app working closely with the Senate led by patients and citizens.
Patient and Public Survey
An online survey was developed focussing on gaining insights from citizens in the North of England and gained traction across the country through social media. Insights were acquired into how and what data patients would be prepared to share. Patients and members of the NWC Senate were asked what questions they would want to be asked in order to consent to share their data. The questions, written by the Senate, formed the basis of the survey and informed the production of an app for consent to share healthcare data.
The survey was used when engaging with patients and citizens at hospital clinics, GP surgeries, Breathe Easy groups and more public events such as iLinks Innovation Conference, NHS Expo and shopping centres. The survey took place over 3 months in 2018.
Some of the findings from the survey
79% of those questioned had registered for access to their electronic records at their GP surgery, but of these, only 21% had used it and reported that it was simpler to order their prescription in the surgery or to ring for appointments. On explaining that both of these could be done online saving the constant redialling when trying to book an appointment, most said they would try and use it in the future.
There were differences observed between the views of patients with long-term health conditions and those of members of the public not currently accessing healthcare.
82% of those asked said they would readily share their healthcare record for research but would prefer to remain anonymous with only 18% refusing to consent to share their data.
When asked if they would agree to be identified in research, this figure dropped to 70% agreeing to share their data. When asked if they would share their data with commercial companies including dentists and opticians, only 61% said they would consent to share their data. When it was explained that companies may include professionals such as dentists prescribing antibiotics, most of the respondents changed their minds but stipulated that they did not want insurance companies or the police to have access to their data.
Voting Polls at Large Events
Coloured counters were used in events and conferences for ‘Happy to share my data’, ‘Would not want to share my data’ and ‘Not sure if I want to share my data’. The voting polls were used in 21 events including universities, festivals, shopping centres, iLinks conference, NHS Expo, Blue Dot Festival, Innovation Agency events, as well as local health melas.
Based on the voting polls, 92% were willing to share their data, a higher proportion of people as compared with the online survey. It is important to note that there were discussions at the voting polls (before voting) on the use cases for shared data and the potential value as part of improving own and wider population health. This is aligned with the general CHC finding that it is imperative to hold conversations on what they are consenting to with both patients with long term conditions and members of the public.
Developing an app-based consent tool
The Senate worked closely with ORCHA, an industry partner, and co-produced a wireframe, or ‘wizard’, for an app as part of gaining consent to share healthcare data for research and other uses. This is essentially a set of carefully curated questions with a guide on how it is presented (the wireframe) in any digital app used in healthcare which requires consent. Patients and members of the public will be able to easily complete the consent process by selecting the data they would like to share, how to share it and can also select or decline the companies with whom they wish to share their health data.
A series of workshops, meetings and working sessions were held with participation from the patients, citizens, healthcare professionals and stakeholders such as NHS Digital. The development phases and review points included the wireframes, early stage prototypes and trial versions.
Following successful completion of the project, the wizard has been adopted as part of the consent process for two regional projects with a view to further roll-out in the region. The Local Health and Care Record Exemplars (LHCRE) Programme, Share2Care in the North West Coast, is using this wireframe to trial consent in two areas including tele-dermatology and breast cancer post-operative patients. The Senate also contributed to early stage feedback on the NHS App. The wireframe is free for app companies and others to use as they work with researchers to gain consent for their projects.