Table 1 (individuals) and table 2 (focus groups) show the characteristics of the sample. Overall, 41% of our sample were men; 83% were white, 8% Asian, 6% African, and 3% mixed race. Of those who chose to give their occupation, most described white collar, manual, or homemaker jobs, and 6% were unemployed; we estimated 20% of the sample to have high health literacy, 45% medium, and 38% low. People attending the walk-in centres seemed to represent a particularly deprived group (typically, young mothers seeking advice on a minor health problem in a toddler) and accounted for a high proportion of the participants with low health literacy. About a third of individuals approached, and a similar proportion of people invited to join focus groups, chose not to participate in the study.
Demographic characteristics of sample for individual interviews in 103 participants
Demographic characteristics of sample for focus groups
Awareness of the SCR and HealthSpace
Table 3 summarises the views of individual participants. Official statistics suggest that by the date of the interview, around 95% of the population in our sample area had been sent a letter informing them that the SCR was being introduced in their area. Only about one in seven recalled receiving this letter. Overall, 29% were aware of the SCR (some via the media or their general practitioner) and 8% were aware of HealthSpace. Awareness of the SCR was higher in those we had classified as having high health literacy (one in two aware) than those with medium or low health literacy (one in four aware). Many believed (wrongly) that electronic records were already shared between health professionals either locally or nationally.
Table 3 Awareness of, and decisions about, the SCR and HealthSpace in NHS service users (n=103)
“Benefits” v “drawbacks”—a personal equation
Most people were positive about the SCR and happy that if they did nothing, one would be created for them. But few were unequivocally in favour of the idea. Rather, people described a process of weighing perceived benefits (box 4) against drawbacks (box 5) for them personally and, when relevant, their dependent relatives. The balance between benefits and drawbacks was different in different situations (as the parent of a child with a behaviour disorder put it, “records are very delicate things”). We have analysed the benefit-drawback equation below in terms of a series of tensions.
Box 4 Benefits of the SCR perceived by service users
Individual interviews (n=103) Commonly mentioned (by more than 10% of the sample)
- SCR is a “good thing” (unspecified or “the more information the better”)
- Having medical details safely and consistently in one place, especially in emergency situations or chronic/complex illness
- Makes care easier/more efficient/saves time/helps you fill out other forms
- Not having to answer questions, fill out forms, or remember what medication you are on
Less commonly mentioned (by less than 10% of the sample)
- Stops people giving you the wrong medication or medication that you are allergic to
- Medical record available when not near own general practitioner/can move house without changing general practitioner*
- Could prevent a recurrence of a previous bad experience (lost medical record, duplicate blood test, bad allergic reaction, collapse)
- Can print off for own records or to take to another healthcare professional
- Provides evidence about a problem that patient knows they have but which health professionals might doubt
- Stops people lying (because it provides an “objective” version of reality)
- Useful for deaf people
Additional themes raised in focus groups (seven groups, 67 participants in total)
- The SCR could be printed out and taken to another clinician for a second opinion
- New immigrants might change general practitioner often and often have particular problems articulating key aspects of their medical record (some of which might be traumatic). The SCR will help continuity of care in this group
- Potential research uses of aggregated data from SCR
- If someone has an SCR a general practitioner would not be able to refuse treatment pending arrival of records
- Useful for elderly people who might be forgetful but on lots of different tablets
- “To put my side of the story”
Box 5 Drawbacks of the SCR perceived by service users
Individual interviews (n=103)
- Malicious or inappropriate access
- Benefits agency
- Employers/insurance companies/credit control agencies
- Local NHS colleagues (unauthorised access to records of NHS staff)
- Parents (in relation to pregnancy test or termination of pregnancy)
- “The general public”
- Security breaches
- Technical error (includes power cuts, system breakdown)
- Human error or not enough people to run the system
- SCR a “bad thing” (unspecified or all computers are bad)
- Stigma/labelling (such as, depression, counselling, sexual infections, child with ADHD (attention-deficit/hyperactivity disorder))
- Waste of money
- People won’t understand their choices/too complicated
- NHS would need to provide more computers—for example, in operating theatres
- Mistaken identity (for example, similar name)
- If inaccurate, could cause more harm than good
Additional themes raised in focus groups (seven groups, 67 participants in total)
- Allows general practitioners to turn away patients who seek to register with them but might be expensive to treat
- Government would sell data to private companies
- Staff “incompetence” is likely to exacerbate problems if the SCR is introduced as more can go wrong
- An accurate and complete SCR depends on data quality standards and practices
- People with sexually transmitted infections might be open to blackmail as information indicating an affair could be passed to a spouse
- Discriminates against those who have chosen not to register with a general practitioner
- Family members could learn of a drug addiction
The most commonly cited factor influencing the decision to have an SCR was personal experience. People who had had an adverse drug reaction, an episode of loss of consciousness, lost medical records, or a “near miss” medical error, and those with serious or complex health problems (especially those with multiple comorbidity) tended to view the SCR positively (“I suffer from these mini strokes, if I’m away on holiday and I had one of them, they would know exactly,” older person in focus group). Those who had been the victim of mistaken identity (in the NHS or outside it), an incorrect medical diagnosis, or identity fraud (such as stolen credit card) tended to be opposed to it. Those who lacked relevant personal experience were often undecided about, or disinterested in, the SCR.
For most people, the personal risk-benefit equation came out in favour of having a SCR but against having a HealthSpace account. Many were unsure of the purpose of HealthSpace, describing it as “pointless,” “irrelevant,” and not fit for purpose (“I would just rather write it down in the diary or just hide it underneath my bed or something,” young person in focus group). They also saw HealthSpace as a potential weakness in the system in terms of security. Several said that they preferred to discuss their health issues with their own general practitioner or nurse (or in one case, a favourite receptionist). We interviewed one person who had signed up for a HealthSpace account, accessed their record, and was now trying to de-register because he had found it far less comprehensive and useful than he had expected. A small but important minority, however, saw potential benefit of HealthSpace for keeping track of their own or a relative’s chronic illness.
Tension 1: Reducing or exacerbating the impact of stigmatising illness
Many participants (including advocates who claimed to speak for “vulnerable groups”) assumed that someone with a potentially stigmatising condition would not want an SCR. But most people who actually had a serious long term condition thought that the risk of disclosure to a third party was outweighed by the benefits of having an accessible record. Two individual interviewees spontaneously disclosed their own epilepsy, for example, as a reason why they were strongly in favour of the SCR in case they collapsed unconscious.
The idea of a “virtual sealed envelope” (see box 1) for sensitive information was viewed positively by some participants in the focus group (who cited sexually transmitted diseases or termination of pregnancy as examples of things people would want to keep private) but negatively by others. Mental health service users and those on a drug rehabilitation programme, for example, expressed concern that doctors might get a distorted picture of their health needs if key information was missing, or assume a more stigmatising diagnosis than the one that was “sealed” (“they might think you’re a psycho”. . . “or a fraggle [sex offender],” participants in drug rehabilitation focus group). Some but not all people with HIV (especially onewho had contracted it through occupational exposure) thought that their status was nothing to be ashamed of and that seeking to hide it in a “sealed envelope” would add to the stigma.
Tension 2: Increasing or decreasing access to health care for vulnerable groups
Advocates of people with limited spoken English said that the SCR might make it easier for disempowered minority ethnic groups to access and register with a new general practitioner as some general practitioners were (allegedly) known to use lack of the proper paperwork (such as proof of identity) as a reason not to register a patient. They also thought that the presence of an SCR would enable an unscrupulous general practitioner to preview someone’s record before accepting them and selectively turn away those with complex, expensive to treat, or poorly controlled diseases. Participants in several focus groups suggested that once the SCR was introduced nationally, illegal immigrants might “go underground” rather than seek health care.
Tension 3: Increasing or decreasing the quality and efficiency of care
Participants with chronic illness described frustrating experiences in hospital outpatient departments when their paper records had been unavailable and they had had to have repeat blood tests, x rays, or come back on another day, and anticipated that the SCR would make such experiences a thing of the past. Many assumed that their SCR would necessarily be complete, accurate, and universally accessible. They saw a link between these aspects of the record and quality of care (“I would like to go to somewhere and be treated properly, with all my record,” participant in HIV focus group). But others rejected a view of the SCR as a “smart machine,” protecting against the impact of staff error. They thought the SCR was likely to require sophisticated skills and consistent practices and that the quality of data on the SCR would only be as good as the data quality standards and practices that support its creation and maintenance. If the NHS could not get “simple” paper records right (they reasoned), difficulties were even more likely with shared electronic records.
Tension 4: Making care more objective—or entrenching prejudice
Some people believed that the SCR would provide dispassionate information to support “objective and “professional” care. Mental health service users, for example, pointed out that their condition (and their ability to give a credible account of themselves) fluctuated; having it documented on an SCR might enable them to be taken seriously in an emergency rather than turned away as “stroppy.” Others, however, were concerned that a diagnosis on the SCR might lend false objectivity to impressionistic or one off assessments, especially of a person’s mental state, thereby colouring the judgment of others in the future.
Tension 5: Increasing or decreasing patient empowerment
Some participants said they would like to view their SCR to see what the doctor had written about them, and believed (incorrectly) that the SCR would contain explanations and clarifications of what had been said in a primary care or outpatient consultation or why they had been sent for a test. Advocates of those with limited spoken English suggested that such people valued the written word (particularly numerical data) over oral explanations as these would be more readily assimilated by someone with limited English.
One of the commonest perceived benefits of the SCR, however, was its potential to save having to fill out forms or remember what medication one was taking. Many participants whom we judged to have low health literacy gave “not bothered” or “don’t care” responses to the question “Would you like to have an SCR?” often citing limited capacity to understand (“I can’t get my head round it”). As box 6 shows, the overwhelming reason for people in this sample not wanting a HealthSpace account was uninterest in their own health record and, in a few cases, an active distaste for seeing information about their illnesses (“I wouldn’t want to look nothing up on myself, like”). Older people found the idea of accessing their personal health data amusing (“You’ll become a hypochondriac!” older person in focus group).
Box 6 Attitudes of service users to HealthSpace
Individual interviews (n=103) Would not want any kind of HealthSpace account (total n= 62)
- Not interested, wouldn’t want to see own record (n=44)
- Worried about security (n=9)
- Prefer to discuss my health with my general practitioner or other practice staff (n=8)
- Don’t use the internet for anything/haven’t got a computer/“I’m old fashioned” (n=7)
- Pointless, wouldn’t tell me anything I don’t already know (n=6)
- Registration process too much hassle (n=4)
- Worried about a family member or partner seeing (n=3)
- A printout of my general practice record would give all the information needed (n=3)
- “No time to mess around” (n=1)
Yes, would like some sort of HealthSpace account (total n=23)
- Sounds like a good idea/sign of progress in the NHS (n=5)
- Would like HealthSpace to keep track of child or elderly parent’s illnesses (n=5)
- Would like to see HealthSpace once, just to have a look at what is there (n=4)
- Have a lot of health problems myself, would like to keep track of them (n=4)
- Enjoy using computers/interested in playing with the technology (n=2)
- See my [child’s] x ray pictures (n=1)
Undecided (total) 10
- Haven’t thought about it, but haven’t ruled it out (n=6)
- Might want it but it’s not a priority (n=4)
- Ambivalent (because of security worries) (n=2)
- Unable to understand explanation of what HealthSpace is (n=2)
Additional themes raised in focus groups (seven groups, 67 participants)
- Creates a route for hackers to access the SCR
- Not fit for purpose—could just as easily write personal health data down in a book or keep a file on a personal computer
- A person’s medical record could be accessed by a partner without their full consent if they were in a coercive domestic relationship
- Registration process is complex and requires high IT literacy; this will discriminate against people with low literacy and those who are dyslexic
- Registration process requires a consistent date of birth, consistently spelt surname, and three pieces of identification—for example, utility bill, driving licence; refugees and asylum seekers might not have these documents and might use different spellings of their surname.
Tension 6: Increasing or decreasing clinician-patient trust
A positive attitude towards the SCR was often linked to implied trust in the honesty and motives of NHS staff (“[they will] just see what’s wrong with you. It’s not [as] if they’re up to jack [rob] you or nothing,” individual participant). In situations where trust in the clinician was low, the SCR and HealthSpace were seen as potentially able to legitimisethe patient’s account of reality. For example, some patients hoped to use these technologies to “prove” that they had genuinely been ill on a previous occasion or were really taking the tablets they claimed to be taking. Where trust was high, access to one’s medical record was viewed as unnecessary and even undesirable. At one general practice, for example, there was strong resistance to the idea of HealthSpace as patients seemed to think that this would undermine their good relationship with surgery staff (“It’s a terrific surgery so there’s no need for something like HealthSpace,” individual participant).
Some participants (especially mental health service users) thought that NHS staff had dismissive attitudes towards them, and some had little confidence that the SCR would be used as intended. Trust (or lack of trust) in a member of NHS staff seemed to be a feature of the relationship with a particular individual rather than of that person’s formal role or job status (“He could be a snidey little GP,” young person in focus group) and seemed to be closely linked to continuity of care (“I’m perfectly happy for anybody at my doctor’s to look at my records because I know everybody at my doctors. I’m more happy for them to have my files, but anybody else, no,” participant in drug rehabilitation focus group). Most participants, particularly those with chronic illnesses, wanted to have an SCR but also wanted to control who had access to it at the point of care.
Tension 7: The state as protector or exploiter of the citizen’s data
People were relieved to hear about the extensive technical and operational security measures associated with the SCR (which include secure extranet access, password and role based access controls, and penalties for attempting to access a patient’s record inappropriately).12
While not a single participant thought that these measures would guarantee the security of their data, most thought that the small risk of identity fraud, disclosure, or blackmail was worth taking. They contrasted personal health information (seen as a low security risk) with their bank details (much higher risk), and some people with serious illness joked that nobody would want to steal their identity.
Around one in 12 people thought that the SCR was a bad idea “on principle,” viewed the intention to create one as an infringement of their rights, and drew explicit parallels with government plans to introduce identity cards and the clamp down on social security fraud (which some saw as covertly linked to the SCR). Some were concerned that once consent for an SCR had been given, pressure would build from a host of public and private sector organisations to access the data, and the unscrupulous government would soon be tempted to make money from a range of secondary uses.