Written evidence submitted by Healthwatch England (DHS0033)

About Healthwatch

  1. Healthwatch England is the independent statutory champion for people who use health and care services. Our job is to make sure that those who run local health and care services understand and act on what really matters to people.

 

  1. A local Healthwatch exists in every area of England. We support them to find out what people want from health and care services and to advocate for services that work for local communities. Local Healthwatch also act as our eyes and ears on the ground, telling us what people think about local health and social care services.

 

  1. We use the information the network shares with us and our statutory powers to ensure the voice of the public is strengthened and heard by those who design, commission, deliver and regulate health and care services.

 

Our position on digitisation of the NHS

  1. Healthwatch England broadly welcomed the Department of Health and Social Care’s new plan for digital health and social care published in June 2022 as an opportunity to deliver better and more efficient care, improve communication between patients and services and help more people be in control of their own care.
  2. However, if the plan was not delivered correctly, we warned that it could create barriers to healthcare for people on lower incomes, disabled people or people who do not speak English as a first language. Some people would need support to gain digital skills and the NHS would need to maintain traditional models of care alongside digital innovations, we added.
  3. As well as generally supporting digitisation in delivery of health care, Healthwatch England also broadly supports NHS data being used for medical research. But a national publicity campaign is vital to help the public make informed choices about the use of their data, along with transparency over how and who, uses this data.
  4. Healthwatch England’s position is informed by five major research projects we have undertaken in the past four years on digitisation and care records as well as views shared by up to 2 million members of the public across England each year with their local Healthwatch.
  5. We welcome the opportunity to share these findings in more depth in our response to the Committee’s Independent Expert Panel. We note that our response is similar to our written evidence to the Committee’s separate and ongoing Inquiry into Digital Transformation in the NHS, which we submitted in June 2022.

 

 

  1. Response to specific Panel questions
     

Our evidence specifically responds to policies on ‘care of patients and service users’ and ‘health of the population’ (1,2,3 and 5 of the panel’s 9 areas for evaluation).

 

  1. Our response to:

Policy area 1: ‘By 2024, 75% of adults will have registered for the NHS App with 68% (over 30 million people) having done so by March 2023.

Policy area 2: ‘By increasing digital connection and providing more personalised care, we can support people to monitor and better manage their long-term health conditions in their own homes, enabling them to live well and independently for longer.’


Research by Healthwatch during 2019, which saw 125,000 people’s views and experiences of care, gathered by local Healthwatch to shape the NHS Long Term Plan, showed there was significant appetite for greater use of technology to make care easier to access and to improve communication with health professionals:

 

“As a patient with myeloma (a blood cancer), I would like to be able to access my blood results online and not have to wait for clinic appointments. It can be an anxious wait at crucial times in my disease.”

 

“Ensure every professional interacting with me has access to my full health records (at least the current situation and data for 2 years) and every aspect of my health management. I do not want to repeat everything to each professional I see.”

 

  1. People also said they felt frustrated by slow developments to NHS online systems and said they would like it to be easier to access their notes, make all types of appointments, and see their test results online. We also heard that virtual appointments could be particularly helpful for people living in rural areas who must make long journeys to hospitals for check-ups, and for working people who find it difficult to get time off for medical appointments.

 

  1. Some people also told us they would like to be able to check real-time A&E waiting times online and to have access to apps that provide support whilst they’re on waiting lists.

 

  1. Individuals for whom English isn’t their first language, added that they would benefit from digital access to translated materials and interpretation.

 

  1. The Covid pandemic accelerated patients’ use of technology when interacting with the NHS. As GPs offered fewer face to face appointments under a new way of working ordered by NHS England, patients moved to phone or video call consultations.

 

  1. Restricted visits to practices also prevented patients picking up or dropping off paper prescriptions, forcing more of them to sign up to online prescription ordering via GP online systems such as ‘Patient Access’ or the NHS App, which would then be electronically sent by GPs to patients’ chosen pharmacies.

 

  1. NHS App downloads significantly increased when the NHS Covid Pass was added to the application in May 202, to allow people to show their vaccination status. Of the 22 million total downloads of the NHS App between its 2018 launch and 31 December 2021,18 million occurred after the Covid Pass was added, according to NHS Digital.

 

  1. However, more information is needed to understand how widely the public is using the NHS App’s features after downloading the app to their phones or tablets. The latest GP Patient Survey shows that 55% of people in 2022 had used an ‘online general practice service’, up from 44% the year before. (The survey question does not differentiate between the NHS App or GP systems like Patient Access that offer similar or the same features). The top three features used were: ordering repeat prescriptions online (31% compared with 26% in 2021); an online consultation (completing an online form) or appointment (via video call), used by 22% of people, up from 18%; or booking an appointment online (21%, up from 19%).

 

  1. Our research shows there is an appetite for the NHS App to be used for more functions that help people to manage their own health. A research project we undertook with patients using blood pressure monitors at home found that nearly half had to use a paper-based system to record readings rather than being able to electronically submit readings to their GP. Nearly three-quarters (72%) said they would ‘definitely’ or ‘probably’ consider using an app or website in the future to submit readings.

 

  1. Our national campaign on accessible information, ‘Your Care, Your Way’, has also highlighted how the NHS App could be an important tool in flagging people’s need for extra communication support at various parts of their healthcare journey.

 

  1. Some NHS trusts told us as part of our campaign research, that they did not always ask about or record information about people’s information or communication needs on records. Out of 139 NHS trusts who responded to our Freedom of Information requests, 39% said they did not share information about people’s information and communication needs with other NHS and adult social care providers (for example, upon referral) despite this being a requirement of the NHS Accessible Information Standard. Most of those who answered ‘no’ said it was due to their online systems not supporting onward sharing of information.

 

  1. We have recommended that NHS England review current IT systems and present recommendations to ensure they comply with the standard. The review should also address barriers to sharing information on patients' communication needs between services.

 

  1. However, we have also suggested that creating a central information store logging patients’ communication needs which all services could draw from, may also help resolve this issue, circumventing the need for services to pass on communication information with referrals. One way of doing this would be for the NHS App to prompt people to log their communication needs and update them if they change, giving permission for a variety of services to access this information.

 

  1. Ideally, information about communication needs would also be listed on people’s summary care records, allowing professionals across the health and care system to understand how best to support them.

 

  1. Healthwatch also believes that the NHS App could be an effective tool with which services could communicate with patients affected by the backlog of elective operations and treatment. Behind every waiting list statistic is an individual whose delayed care is affecting their ability to work, care for others, or cope with pain. We have recommended that the NHS use all possible communication channels to allow people to regularly give feedback on their condition while they are waiting.

 

  1. One option would be to develop the NHS App to enable patients to submit symptoms or changes in their condition daily. This would also provide patients with an easy process to provide updates on when they no longer need care or wish to cancel an appointment. Doing this could improve remote monitoring, potentially reduce the need for as many patient follow-ups, and minimise ‘did not attends’ (DNAs).

 

  1. As well as harnessing the opportunities of the NHS App and wider digital technologies, Healthwatch believes government must ensure people affected by digital exclusion are not left behind.

 

  1. Our 2021 qualitative project, exploring how the move to remote GP appointments during the pandemic had affected different people, showed a number of causes of digital exclusion. These included:

 

“I don’t want to use computers and I don’t feel I should have to be forced to do this. I am a hands-on bloke and expect a hands-on approach…I think you should have a relationship with your doctor – I prefer to see the same doctor as I like that personal touch.”

“I have no idea about computers – it is like talking in a foreign language.”

“I’ve thought about it [learning digital skills] before and asked my grandchildren for help but they move so quickly I get confused and I lose confidence.”

“For repeat prescriptions you use an online app which I struggle with because I can only use one hand as my left arm is disabled and my shoulders are weak.”

“I am a little bit worried about fraud…”

“I would use a computer and like to be able to get access to the internet if it was affordable. I would rather I could communicate with my GP online, it would be easy and convenient.”
 

  1. People are telling local Healthwatch in 2022 that worsening cost of living pressures make decisions even more stark when choosing which necessities to forego:

“'Despite alerting the trust to my financial and technical difficulties in accessing their online services and requesting all formal correspondence be sent to me by Post [they] continue to send me electronic notifications which I have difficulties accessing on my old PC. I am currently on benefits and do not have the means to purchase a smart phone or repair my P.C. With such a low income, at times I have been embarrassingly forced to choose between, heating, eating or topping up to get internet access.”
 

  1. Our findings have led us to call for five principles for post-pandemic digital healthcare:
  1. Maintain traditional models of care alongside remote methods
  2. Invest in support programmes to give as many people as possible the digital skills to access remote care
  3. Enable GP practices to be proactive about inclusion by recording support needs (language, communication and digital skills) on patient records to inform future adjustments
  4. Clarify patients’ rights to online or offline care
  5. Commit to digital inclusion by treating the internet as a universal right.
     
  1. The evidence we have gathered shows that that NHS App and online tools offer good opportunities to improve patient care, but their full potential is not yet being maximised. At the same time, the NHS needs to ensure that people can still always reach services by traditional methods for those people who lack skills or access to digital technology.
  2. Our response to:
    Policy area 3: ‘Roll out integrated health and care records to all people, providing a functionally single health and care record that people, their carers and care teams can all safely access, enabled by a combination of nationally held summary data and links to locally held records, including shared care records.

 

Healthwatch England believes major progress is needed on this laudable aim. We continue to hear evidence from people who believe that systems and services are not properly joined up, leaving them to have to continually repeat their medical history. Patients think this is due to busy staff not reading their records before seeing them, or they are told by services that letters or other communications from other professionals have been delayed or not received. We also hear that different IT systems do not ‘talk’ to each other or permit access by various professionals, creating barriers to timely transfer of patient information.

 

“I have received treatment in a number of hospitals over the past decade. All were unaware that I have had my spleen removed and I am vulnerable to bacteriological infection and require daily antibiotics.”

 

“When I have had hospital appointments, I wonder why I am asked questions I feel they should know. It's a total waste of time. I feel time at hospital appointments is precious. If all the information is on the screen surely it aids speedier treatment.”

 

“Both of my elderly parents (now deceased) had a wide range of medical problems requiring interaction with different areas of health care - GP, care home, hospitals. Very frustrating - repeating story each time - some still do not realise they have passed away. [I still receive] appointments [for them] for outpatients…even though both died when in NHS care.”

 

  1. We note the imminent launch by NHS England of Accelerated Citizens’ Access in November 2022, to give patients the ability to see any new entries to their GP medical record via the NHS App, followed by historic records being made available next year. We believe this is an important and positive step towards empowering patients to understand their own health, keep track of the progress of any referrals or procedures and query any inaccuracies.

 

  1. However, we also note that progress on this could be affected by guidance sent to GPs in the week before the launch, from the British Medical Association to delay sharing records if they need more time to prepare on patient safety grounds (such as protecting patients with particular mental health conditions or those living with abusive partners). We would urge close monitoring of the number of GPs who seek to delay record sharing, to guard against a postcode lottery of access to records.


 

  1. Our response to:
    Policy area 4:  ‘Through the Data for Research and Development programme we will invest up to £200 million to transform access to and linkage of NHS health and genomic data sets for data-driven innovation and inclusive clinical trials, whose results will be critical to ensuring public confidence in data access for research and innovation purposes.

Policy area 5: ‘NHS Digital will develop and implement a mechanism to de-identify data on collection from GP practices by September 2019.’

 

  1. In 2021, we welcomed the pause to the General Practice Data for Planning and Research (GPDPR) data collection following significant public concerns raised about transparency, privacy, and people’s awareness of the programme.
     
  2. Following widespread discussion in the media about the programme we commissioned Yonder Data Solutions to undertake some rapid public polling regarding public attitudes to data-sharing in the NHS. Key findings included:
    Many people have heard about plans to use patient data.
    The controversy and subsequent media coverage have led to very high awareness of the programme, with 57% of our 2,005 respondents saying they had heard about the plans.

There is a lot of misinformation out there.
When we tested the official NHS Digital animation explaining the plans, only 40% of those aware of the programme said it matched what they had previously understood to be happening.

People still largely trust the NHS with their data.
83% of people rated it as either ‘very’ or ‘moderately trustworthy’ when asked if they thought health service would keep their data safe. However, this has fallen from 92% from similar research we did in 2018.
Willingness to share data appears to have dropped considerably.
Only 53% of people said they were happy to share their data to support planning and research. This roughly compares to 73% found during our study in 2018.

People are not necessarily actively against their data being used.
Almost a third (29%) of respondents said they were undecided about whether to opt out or not of the latest plans. In 2018, when we asked a similar question, only 16% were unsure.

There is a lack of confidence that companies will be held accountable if they misuse data.
Over half of respondents (54%) said they were not confident that companies that misuse data would be fined appropriately. Yet 46% said they would be less likely to opt-out (i.e. more likely to share their data) if this was addressed.

 

  1. On the back of these findings, we called for NHS England to increase transparency and communication with the public and rebuild public trust in the programme before it considered a relaunch.

 

  1. Over the last year we have been feeding into the GPDPR patient advisory panel and setting out the conditions that must be met before the programme is relaunched. We have recommended that patients and the public should:

 

1. Be aware of what GPDPR means for their data

2. Understand why and under what conditions third parties might be able to access their data

3. Be informed of how data-sharing will contribute to public good, and be confident that the GPDPR will have a positive impact on health inequalities

4. Be reassured about perceived risks to data-sharing, confident in measures to prevent misuse of data, and penalties applied in any instance of misuse

5. Be confident that their data will be stored safely

6. Have a meaningful choice to opt out of the scheme at any point, and be able to opt back in at a later date

7. Be able to scrutinise who is accessing their data and why

8. Feel involved in future decisions about GPDPR and other data-sharing initiatives

9. Be confident that GPs support the initiative and have information about patient data readily available through their GP

10. There should be well-advertised, easily accessible avenues for the public to ask questions about the initiative, register concerns, and complain if they feel data is being misused

 

  1. We understand that progress towards the above principles has been made. A new ‘trusted research environment’ is being developed which would control secure access to the data and ensure it is never copied or shared onwards. There was also an intention to develop a national communications campaign to help people to understand how the GPDPR will make use of their patient data. Processes for opting out of the data collection are being simplified and clarified and plans are in place for a publicly accessible register of data-sharing agreements so the public can see who is accessing their data and for what purpose.

 

  1. However, while the programme has been taking the appropriate time to work through the various policy considerations, we believe there should be regular public-facing communications regarding these developments, including the expected time frame for the re-launch of the programme. This could help allay the kinds of concerns that arose from the original launch of the programme, which had appeared to have emerged ‘out of nowhere’.  Transparency over developments is essential in building public trust and ultimately securing the success of data programmes.

 

  1. Another factor crucial in building public confidence will be to address fears about patient data being ‘sold’ to third parties.  While there are very reasonable concerns about data being misused by private interests, there will always be a third party involved in any research grants or agreements where the NHS is allowing academic institutions or medical companies to use data for research purposes. More work is needed to explain to the public the involvement of ‘third parties’, the role of these external partners and safeguards that will be put in place to govern how all parties use shared data under joint research initiatives.

 

November 2022