The Connected Patient (Leadgate) project Report
The NHS pledges to allow every patient access to research. There are known benefits to engaging in research, despite this it is reported that only 14% of patients are participating. To help address this, research capacity and capability is being built in primary care. It is hoped this will aid the shift of research from a secondary care to a primary care setting. Additionally, there is a move to utilise digital communication mediums across the health sector. This links to the vision that each patient will have a single dynamic medical and social care record which they can access. As part of their access the patient will set their own data sharing and communications preferences.
The Connected Patient Project was set in a General Practice and explored the acceptability and feasibility of a novel recruitment strategy. Its ambition was to build a local registry of patients who had indicated their permission (yes or no) to be contacted directly by researchers with information about relevant research projects. To facilitate this, personal details would be shared with the specific organisation. The three organisations put forward were: NHS, Universities, and Commercial Companies.
Added to this the project also asked the patients to indicate their preferred mode of contact from the practice to themselves. This was to gauge the willingness of patients to move towards digital communication and explore the most acceptable method.
The aim and objectives of the Connect Patient Project were:
To evaluate a service improvement project for acceptability and feasibility from the viewpoint of patients and practice staff.
To explore the influences on patient choices and identify if there are any correlations between patient preferences on data sharing, preferred mode of contact, age range, gender and presence or not of a long-term condition.
To assess the impact of carrying out the service improvement project from the view point of practice employees.
To explore levels of trust patients have in different organisations: NHS trusts, Universities, and Commercial Companies
To describe the elements patients take into account when making decisions about potentially sharing personal information.
The project was operationalised via a two-stage process. Work Package 1 (WP1) was a Service Improvement Project (SIP) conducted by a postal survey questionnaire. The questionnaire was sent to all the patients who fell within the inclusion and exclusion criteria (4678).
Work Package 2 (WP2) was a mixed methods research study to assess the acceptability and feasibility of WP1. This was completed by using descriptive statistics and by conducting interviews with both patients and staff.
The WP1 survey had a response rate of 24%. Older, female patients were more likely to respond. 58% of the total 60+ age group responded. 4% of the 18-29yrs. age group responded. SMS was the most popular mode of contact across all age groups with the exception of the 70+ age group, where letter was preferred. Permission to contact by at least one of the three organisations was given by 61% of the responders. The single most popular response was NNN, where permission was denied to all three organisations. This was followed by YYY, which gave permission to all three organisations. Women were more likely to respond yes than men, with the exception of the 70+ age group where more women said NNN, than men. The presence or not of a long-term condition did not affect the permissions responses. However, reflecting the demographic profile of the responders, they were more likely to have a long-term condition.
Interview data revealed that the patient interviewees had volunteered for altruistic and reciprocal reasons. When making decisions regarding sharing personal information, trust is very important. Commercial research organisations are not trusted, despite the knowledge of partnership working in the NHS. Digital contact is seen as progress but other means of contact should not be removed entirely.
Staff interviewees stated that the impact on the practice was far less than expected. The processes required to complete the project took longer than initially thought. The wording of the original information may have been off putting and could be a reason for the non-response. The gain for the practice was seen as a mandate to expand the use of SMS as a contact method. However, this is currently limited by the functionality of the systems in use. Email contact requires further detailed processes.
The SIP was acceptable and feasible for patients and the practice staff. However, the response rate of 24% would suggest it is not a feasible way to build a registry of patients. Whether it affects recruitment has not yet been established.
Recommendations from the project are:
In any further iteration, strategies to reduce non-response should be engaged with.
Splitting the component parts of the project into individual studies may aid understanding and engagement by the eligible population.
Further work is required to explore the scope and acceptability of SMS and email contact.
Additional work is required to explore the granularity of permissions and the rationale for choice.
Overt commercialisation of the research process may hinder recruitment.
Studies in primary care should be targeted at health promotion and chronic disease.
Further work is required at a regional and national level to better articulate the role of commercial companies in NHS research.
Further explore the value and test the outputs from this study by using the practice to approach patients about relevant research. This would facilitate an assessment of the willingness to engage with researchers, when compared with routine response rates from general mail-outs in primary care.