Our mission

use MY data is a movement of patients, carers and relatives

use MY data supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes.

use MY data endeavours to highlight the many benefits that appropriate usage of healthcare data can make, to save lives and improve care for all.

use MY data aims to educate and harness the patient voice to understand aspirations and concerns around the use of data in healthcare delivery, in service improvement and in research, aimed at improving patient decision making, treatment and experience.

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Trust and transparency: GP Data for planning and research

Wednesday, 16 June, 11.00 - 12.30

After the webinar, we sent a follow-up questionaire to delegates, which asked "Do you have any specific advice for NHS Digital on how to ensure that the GPDPR is a success?"

The following is the list of responses which we had:

  • Contact every individual. Tell them what is happening. Be HONEST. Tell them they have a right to OBJECT and tell how and by when
  • My advice would not just be to NHSD - it would be to everyone who can help to give a more balanced platform to discuss the benefits of the actual programme and less of a platform to the privacy lobby, focused on driving opt outs by using emotive and biased language and scare tactics that does not result in 'informed' decisions. There is a reason that national organisations are afraid of transparency - because they are not given a fair trial or a fair hearing. It is all sensation, speculation and fear, fuelled by the privacy lobby and irresponsible media coverage. We all need to hold the commentarial to account as much as NHSD.
  • They need to change the narrative from 'data grab' to highlighting what this actually is, who exactly would be able to use the data and if possible make assurances that it won't get sold on. I feel trust is already fairly low on this.
  • Focus more on quality of rollout than speed - and simplify! I don't think having 2 options for sharing is helpful (reduce it to 1), and calling one of them the same as a medical condition (type 1 diabetes) seems likely to add further to the confusion.
  • Work with people to plan your public conversations
  • Explain what is happening in a clear and simple way
  • The National Data Guardian took a very grounded, sensible approach to the debate and her contributions were well thought out, clear and reassuring. I hope NHS Digital work closely with her and listen to her advice on this project.
  • You need public support - which needs you to communicate with data subjects (patients/public) *&* GPs: clarity over users & uses of data, how it will be accessed & whether it will ever be given to any outside agency: & - above all - to demonstrate that NHS Digital (& X& England) can be trusted..
  • A variety of approaches to deploying the range of advice and information campaigns advocated and sought during the webinar.
  • Include patients and the public in decision making, oversight and governance of the GPDPR. Ensure opt out system is clear and simple to carry out. Spend longer than a month (a year or more) informing people that this is happening - reach out to everyone in multiple ways - big campaign adverts; tv, social media, letters (e.g. the organ donation opt out change). Start with speaking to GPs and other health care professionals. Have a plan on what exactly you will use the data for and who will be able to access it. Decide who will make decisions regarding this and include patients/public in this. Be good to know what is happening at all stages: who has asked for access and why; who has been given access and why; what data has been used; what was the results from using the data. Have all research carried out in a trusted research environment. Listen to MedConfidential - they seem to understand what would be a good approach.
  • Clarity in communicating to Patients is key - use as many mediums as possible including text, SM, online Infomercials, Gp surgery on-screen videos, through public services and mailing (email and letters), literally anything. GP Practices and PPG's or similar should also be furnished with Toolkit of Resources to enable/Assist bringing Patient awareness through mediums mentioned above. Most of all training of GP staff/front line so they can disseminate clearly and accurately options and outcome of decisions. Even if a script is given in addition to page of FAQ (frequently asked questions), less acronyms unless explained in a glossary. Communication, clear and concise and in different languages as always is key when communicating to the masses. Positive and Negative/Pros and Cons concisely shared so people are better informed when deciding. We now know how confused people were with a single question in Brexit referendum. Don't let this be a repeat process and we all end up confused and potentially useful data is not accessible for health and care services to be able to save more lives in future.
  • Make the public benefit of the data clear
  • Delay the collection of data and engage in explaining to the public how their data will be used and what safeguards are in place. The NHS is a trusted body however the government is not. You need to convince people that the regulations and safeguarding won't be ignored or changed after the event.
  • Make sure that unauthorised Companies (US Companies) do not get access to patient Data through the back door!
  • Please delay the start of this important project to ensure proper consultation with firstly GP's and then the public so they can be properly informed about choices
  • 1) must get the data protection side right: need to mandate use of TRE only (NHSD's own, or an approved third party's) 2) must commit to having patient/public input to all decisions about who gets access to our valuable data 3) must tell everybody in England about the plan and give them an opportunity to choose what to do in good time ahead of implementation.
  • Spread the message widely
  • Clarity. Communication. Safeguards.
  • Better understanding of 'Sensitive Personal Data' along with guidance of collecting, storing and destroying of personal data in relation to request this information from recruiters for roles/position that require certain protected characteristics to be present
  • Given complexity of topic for many people, to use clear and compelling visuals [infographics, cartoons...] to illustrate data flows~
  • Opt out needs to be a clearer pathway and much better explained, hopefully leading to fewer opt outs
  • Absolute transparency on what data is held by NHSD and who can access it, for what purposes. I recognise that this has implications beyond GPDPR - what I would really like to see is a full discussion about all data use by NHS. My view is that there are clear legitimate reasons for using NHS data for integrated patient care, NHS planning and medical research- and indeed an argument that it may be best to inform patients that these uses are part of the health system- with privacy safeguards. I am concerned about the piecemeal opt-outs for data collection which have crept in over the past few years - we need a single conversation.
  • It was clear from the webinar that most people are happy for their de-identified/anonymised data to be used for research that benefits public health, as long as data is used and stored securely. The key problem is that the opt out covers all uses of health data beyond a patient’s direct care; it’s really difficult to understand what kind of research/planning it stops data from being used for, and for people to weigh up the perceived risks (e.g. re-identification by commercial companies using data for marketing purposes) with perceived benefits (e.g. academic health research). Governance of data for commercial purposes needs to be transparent and tight to prevent opt-outs which will have substantial effects on health research and public health planning.
  • Patients need to be confident that their data is not going to be used for commercial purposes related to their own health. Right now, I would advise everyone to opt out for anything they can and fight the proposals. Those of us with some understanding have zero confidence which has been underwritten by the mad rush to mine/grab data at a time when GPs are extremely busy and people are naturally focused on other matters. It looks like the government are trying to hide something and that means we have zero trust.

 




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